Health Inequalities: Contributing to national and local consultations

Contributing to national and local consultations


For Fulfilling Lives South East (FLSE), engaging in formal consultations is a way of influencing systems change and connecting with key decision makers.

Engaging in consultations provides a way of informing and influencing the development and delivery of a project or programme, the commissioning or delivery of a service, or the development of a strategy or policy. Consultations offer the opportunity to engage with national Governmental agencies and public bodies, Local Authorities and Commissioners, in a dialogue to help them better understand your needs and opinions, which they will consider when developing policy and delivering services. Engagement in formal consultation provides one of the greatest opportunities for marginalised communities and voices to be heard in spaces which are not traditionally accessible.

The Kings’ Fund advocates that ‘people and communities using health and care services are best placed to understand what they need, what is working and what could be improved.’ Formal consultations provide an opportunity for those using services to have their say. 

The FLSE team has used opportunities to participate in consultations for this reason; to promote the voices, experiences and views of people with experiences of multiple and complex needs (MCN). In our work to tackle health inequalities, we participated in and contributed to the following four health-related consultations nationally and locally:

We have welcomed the opportunity to address and highlight inequalities for people experiencing MCN and feel that these consultations are symptomatic of a system that is ready for change and looking to listen to lived experiences. 

This blog contains an overview and summary of our responses, our messages and reflections on how the system can continue to improve. We also share our way of engaging with health-related consultations to encourage more agencies to engage in these opportunities as a way to champion the views of, and improvements for, the people they support.

Co-production and consultations

For all our responses to consultations, we have worked with the Service User and Engagement Team, volunteers and experts by experience, to build and shape our messages and recommendations. We think it incredibly important to represent our clients and amplify their voices when feeding into consultations and help tell their stories to demonstrate what impact (positive or negative) current local and national policies are having on their lives.

Louise Patmore, Programme Lead Participation Mental Health Collaborative with Sussex Health and Care Partnership, who we have closely worked with says that

Co production is so important in the transformation and development of our services in health. For many years we have had a “doing to” way of working and people have not been able to have effective choice or control over their health care. It is recognised that health seems to have a very specific problem about providing patient needs versus organisational want, be that financial saving or accommodating new services. Co production enables – or should – enable us to be able to hear from those that actively use services and its impact. We need to be open hearted and minded to the voice of people, especially those that have specific needs. Society is always judged on the way it treats the less able. We need to be able to think differently and using coproduction to be able to shine a light on our issues, become more transparent about them and work together in a diverse way to find solutions can only help to improve our services and provide better, more efficient ways of supporting people and reducing pressures on the system and making sure that people get the right type of treatment at the right time. It will help us with efficiency and economy but only if we truly coproduce and share power.

The people who participate benefit from inclusivity and services are known to become better the more involvement there is. It helps us to grow a listening culture and a more empathic culture that also supports staff wellbeing.’’

Similar sentiments have been expressed by Ian Harrison, our Coproduction and Engagement worker:

Co-producing consultations with people with lived experience is a must.  Our review of the Mental Health Act would not have been as in depth or as targeted without the contribution of one our volunteers.  The breadth of knowledge from their personal experience and their past work with people of this cohort surpassed our own by a large margin in particular areas.  Without their expertise and detailed knowledge of specific parts of the system and its effects on those it is designed to help, valuable information during a pivotal moment could have been lost, and the opportunity to affect change in a key area would have been missed.

1. The Mental Health Act- review

Since our submissions and previous blog post, the government responded to the Mental Health Act (MHA) review and we are happy to see an acknowledgement that the MHA doesn’t always work for patients, their families and carers. Our full blog to comment on the government’s next steps can be found here. We welcome the new guiding principles of choice and autonomy, least restriction, therapeutic benefit and the person as an individual in the Mental Health Act Review as the focus is now shifting to a more person-centred approach. 

However, we are uncertain how the proposed changes in the MHA can lead to increased funding into services and equity in place-based mental health care provisions and hope the Government can clarify this during 2022. 

2. The East Sussex Mental Health Inpatient Consultation

The FLSE team was keen to participate as we know that over 75% of FLSE clients have a self-identified disability, of which 84% had a mental health problem. We contributed extensively to the East Sussex Mental Health Inpatient-consultation and our suggestions and recommendations have been incorporated into the future service design plans for a new inpatient facility that will be built in Bexhill by 2024.

After multiple consultations and workshops throughout 2021 with the East Sussex Mental Health Inpatient Consultation team, we had representation from volunteers and experts by experience, the full report has been published.

In best practice public consultation, understanding the potential impacts of proposed changes to public services on vulnerable individuals and groups is vital. While every effort is made to reach out to these groups during consultation and engagement, there are often challenges and barriers to hearing first-hand feedback; this is perhaps particularly the case for those with multiple complex needs who may be experiencing crises or difficult personal circumstances.

In this context, the support and input of organisations like Fulfilling Lives South-East are invaluable; in a recent consultation around inpatient mental health services, the FLSE team took the time to take part in an interview with Opinion Research Services (ORS) researchers and a workshop for stakeholder organisations, and to prepare and submit a detailed response for inclusion in the final feedback report. The combination of professional expertise and lived experience that FLSE were able to bring to bear meant that the insights they provided via ORS contributed valuable evidence for conscientious consideration by senior leaders and decision makers in the NHS.

Charlie Wilson, ORS Senior Researcher and Public Consultation Lead, sharing his reflections on the impact of the FLSE engagement with the consultation.

3. The Women’s Health Strategy

Throughout 2021, there was a call for evidence to inform a new national Women’s Health Strategy. This call for evidence has now closed and the government has published its Vision for the Strategy in late December 2021.
The Vision document identifies six key areas of improvement: 

  • Menstrual health and gynaecological conditions
  • Fertility, pregnancy, pregnancy loss and postnatal support
  • The menopause
  • Healthy ageing and long-term conditions
  • Mental Health
  • The health impact of violence against women and girls

The full Strategy will be published in spring 2022 but in the meantime, we have written a letter to Maria Caulfield MP to share our reflections and recommendations to improve the health of women with MCN for, namely:

  • Women experiencing MCN are underrepresented in consultations;
  • We are concerned that women experiencing MCN have not been named as a separate category in the strategy;
  • We would like to see training on trauma informed approaches and a less siloed approach between physical and mental health throughout the NHS, adult social care and the third sector.

4. B&H Mental Health Crisis House Service- survey

In August 2021 we contributed to the B&H Mental Health Crisis House Service survey organised by the Brighton & Hove Clinical Commissioning Group. This service aims to provide short-term intensive support and care (e.g. 7 days) to patients to avoid hospitalisation.

Following the survey, the Council has put together an ambitious specification and contract for the new Crisis House service and commissioners are now in the process of reviewing applications from the tender.

Looking through the service specification, we are happy to see Multiple and Complex Needs defined in a similar way to FLSE’s definition; as people who experience several problems at the same time, such as mental ill health, homelessness, drug and alcohol misuse, offending and family breakdown.

However, we noted that the new service will predominantly take referrals from the existing mental health trust services (SPFT). We would have liked to see the referral pathway to be widened beyond the SPFT Mental Health Urgent Care Services, with GPs and third sector organisations also being able to refer into the service. The service will have single rooms with en-suite bathrooms and we welcome this and included a recommendation on this as part of our feedback in August, However, we are concerned that there are no female only spaces required in the new specification. The Contract refers to specific patient cohorts who will be a priority for improving access to mental health crisis services, but MCN is not one of them.

On a positive note, there is a commitment for the service to provide support, which is Psychosocial and Trauma Informed, and includes a comprehensive training package for staff on trauma informed care and dual diagnosis. (p.22) We support these approaches as our work highlights how valuable this approach is to building trusting and supportive relationships with people who have MCN.

We are also pleased to see that it is part of the acceptance and inclusion criteria that people can access this service if they are ‘ready to engage with the Recovery Model and have consented to stay at the Service’ (page 17), so that people with a co-existing substance use and mental health needs aren’t excluded. And that the service will link patients with other statutory and voluntary sector services to support a patient’s health, substance misuse, mental health and social care.

Key messages for the healthcare system

Chief Medical Officer, Prof. Chris Whitty, is calling for a national strategy for public health as well as an increased investment in prevention and spending that supports population health to improve the health and wellbeing of coastal communities. The Kings Fund is also calling for a cross-governmental strategy to reduce health inequalities for people with MCN.

FLSE supports both of these national developments and calls locally for:

  1. MCN, or multiple disadvantage, to be named in local and national healthcare policies, strategies, and service contracts and paired with an expressed commitment to meeting the needs of this group. Due to the stark health inequalities faced by people with MCN, their needs must be factored into local Equalities Impact Assessments and given the same profile as other protected characteristics.
  2. Setting up a local review process to monitor deaths of people experiencing MCN and assess progress in improving health inequalities for this group.
  3. Offering choice to patients with MCN as crucial to increasing access to primary healthcare. We call for increased community-based primary care that enables engagement through walk-in clinics and drop-ins as well as healthcare professionals providing outreach into communities to build relationships and deliver care outside of traditional spaces. This can be enabled by scaling up existing good practices as suggested in the FLSE Bright Spots report.
  4. Integrating frailty scores as a routine clinical assessment tool with rapid access clinics to respond to these high frailty scores. This will enable the coordination of care for complex conditions for people with MCN.
  5.  A dedicated funding stream within Sussex’s new Integrated Care System to support the needs of people experiencing multiple disadvantage. This would be a vehicle to promote the commissioning of a cohesive, joined up healthcare response to meet the needs of this distinct group of people. 
  6.  Trauma-informed practice training to be delivered to all healthcare staff members to help improve communication with and service approaches for people experiencing MCN.

Reflections on the benefits and limitations of consultations

FLSE is aware that consultations provide an excellent opportunity for changing and influencing key decision makers. We have however noticed that the way they are being advertised for is inconsistent, irregular and at short notice. It can take the form of completing online questionnaires and surveys, and drafting reports in response to calls for evidence.

We understand that some organisations don’t have the resources or capacity to participate in the consultation process. Nevertheless, engagement in formal consultation provides one of the greatest opportunities for marginalised communities and voices to be heard in spaces which are not traditionally accessible.


Authors:

Michaela Rossmann, Systems Change Officer

For further information about Fulfilling Lives work in this area, please contact:

Michaela Rossmann, Systems Change Officer

michaela.rossmann@sefulfillinglives.org.uk

Rebecca Rieley, Systems Change Lead:

rebecca.rieley@sefulfillinglives.org.uk  

For more information sign up to our newsletter:

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The Intermediate Care ‘Step Away’ model

A holistic community support approach with testing of frailty score-based interventions


Sharing learning

In 2021, the Brighton Homeless and Inclusion Health Specialist Service with Sussex Community NHS Foundation Trust secured funding from the Department for Levelling Up, Housing and Communities and Brighton & Hove City Council to deliver an Intermediate Care ‘Step Away’ programme. This required a multi-agency approach between medical experts, nursing and other allied health professionals to provide support for homeless and insecurely housed patients in the community after being discharged from hospital.

Fulfilling Lives South East (FLSE) is committed to improving systems and services locally for people experiencing multiple and complex needs and a partnership has been formed between our teams to share learning with the wider system by establishing a Steering Group for the agencies involved in the ‘Step Away’ service.

Our data collection gives an overview of the patients supported by the ‘Step Away’ service:

  • Between May 2021 and January 2022 a total of new 33 patients have been referred.
  • Most patients were aged 40 to 59.
  • Two thirds were male.
  • 55% of patients had further support needs such as drug and alcohol dependency and mental health issues.
  • Most patients lived in hostels, temporary accommodation, emergency accommodation or sleeping rough.

FRAILTY

One element in particular has stood out in the Step Away service data:.  patients were a lot more frail than the average population in the same age category. The Step Away team and FLSE started to focus our attention to this element of the service and build up a better picture of the patients.

The Edmonton Frail Scale, has been used as the chosen assessment tool for frailty and anyone trained is able to use it not just healthcare professionals. The Edmonton Frail Scale covers cognition, general health status, functional independent, social support, medical use, nutrition, mood, continence and functional performance.

Our findings were worrying – more than half the patients had moderate and severe frailty.

OUR LEARNING

Within our contribution to the Sussex needs assessment, FLSE made a specific recommendation for women with MCN to be named and considered in the strategy. We are delighted to see ‘Responsive to Multiple Disadvantage’ listed as one of six key strategic priorities in the finalised strategy published in January 2022. This priority establishes the need for specialist provision to support victim/survivors with MCN, and makes recommendations for Sussex local authorities, specialist domestic abuse accommodation providers and support services to holistically support those with MCN, whilst ensuring accessibility of services.

We also raised concerns around limited and unsuitable move-on options for victims/survivors with MCN. We highlighted the benefits of adopting a ‘Housing First’ model paired with specialist DA wrap-around support, in ensuring accommodation is appropriate to MCN and simultaneously provides a long-term housing solution. As a result, the strategy commits to exploring accommodation and support options appropriate for the needs of survivors with MCN including short-term respite facilities, specialist housing, move-on pathways, and long-term floating support.

WHAT WE WOULD LIKE TO SEE NEXT

  1. Frailty scores need to be integrated into housing options assessment tools to help allocate care and support 
  2. Investment in a one-stop-shop clinic to respond to the moderate and severe frailty scores (especially for patients with multiple and complex needs) – this will improve accessibility to services and lead to better diagnosis and clinical investigations 
  3. Long term substance use to be seen as a chronic health condition – this impacts on frailty of patients. We support the recent Dame Carol Black review where she called on the government and society to recognise addiction as a chronic health condition

The full presentation the team delivered at the Pathways from Homeless conference 2022 can be found here.


Authors:

Michaela Rossman and Rebecca Rieley

For further information about Fulfilling Lives work in this area, please contact:

System Change Officer

michaela.rossmann@sefulfillinglives.org.uk

Rebecca Rieley, Systems Change Lead:

rebecca.rieley@sefulfillinglives.org.uk  

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Open letter to MP Maria Caulfield re. The ‘Women’s Health Strategy: Our Vision’

In 2021, the government called for input on the Women’s Health Strategy with the following key themes:


We fed into this consultation with experts by experience, front line workers, the service user engagement team as well as the systems change team.

In January 2022, the new Vision for the Women’s Health Strategy has been published and we are pleased to see a local Member of Parliament- MP Maria Caulfield, leading this initiative.

We now are keen to share our reflections on the recent Vision for the Women’s Health Strategy for England by publishing the letter we have sent to MP Maria Caulfield in response to the publication on the 7th March 2022. And we hope to get an opportunity to discuss this further.


Open letter from Fulfilling Lives South East to the ‘Women’s Health Strategy: Our Vision’ publication

Subject: Women’s Health Strategy: Our Vision 

Date: 07/03/2022

Contributors:
Kate Jones, Engagement and Co-production Worker
MichaelaRossmann, Systems Change Officer michaela.rossmann@sefulfillinglives.org.uk
Rebecca Rieley, Systems Change Lead- rebecca.rieley@sefulfillinglives.org.uk

Sue Westwood, Expert by Experience
Victoria Hensley, Engagement and Co-production Worker
Contact details: Rebecca Rieley & Michaela Rossmann, Fulfilling Lives South East – BHT Sussex,144 London Road, Brighton, Sussex, BN1 4PH

 

Dear Maria Caulfield,

We are a local charitable project who are keen to share our reflections on the recent Women’s Health Strategy and are pleased to see a local Member of Parliament leading this initiative.

  1. OVERVIEW OF FULFILLING LIVES SOUTH EAST PARTNERSHIP

The Fulfilling Lives South East (FLSE) Project started in 2014 and is funded until July 2022 by the National Lottery Community Fund, and operates in Brighton and Hove and East Sussex, as one of 12 projects across England. 

We are funded to:   

(a) provide intensive support for people experiencing multiple disadvantage,   

(b) involve people with lived experience of multiple disadvantage at all levels and,   

(c) challenge and change systems that negatively affect people facing multiple disadvantage.  

We have highlighted six themes that have arisen from our work to date and within each theme we have further identified several Commitments for Change – changes that we believe will help improve support systems and services for people with multiple and complex needs.    

One of our core themes of our  Manifesto for Change is addressing Health Inequalities. 

  1. MULTIPLE AND COMPLEX NEEDS (‘MCN’)

Multiple and complex needs (MCN) are persistent, problematic and interrelated health and social care needs which impact an individual’s life and their ability to function in society.  They are likely to include; repeat street homelessness, mental, psychological and physical health problems, drug and/or alcohol dependency, and offending behaviour. People with MCN are more likely to experience violence and abuse, including domestic violence, live in poverty and have experienced trauma in childhood and throughout their lives.

  1. OUR RECOMMENDATIONS

How we are feeding into the Women’s Health Strategy- Consultation: 

FLSE has fed into the open call for evidence for the Women’s Health Strategy as a collaboration between the Systems Change Team and the Service User Involvement team. Together, we have used case studies, experts by experience and data from our project to inform the below recommendations:

A) Women’s Voices:

FLSE would like to see the healthcare system change to a more inclusive, trauma informed and collaborative system, where women don’t feel stigmatised when seeing professionals. Ideally, specific women’s only spaces are created so that taboos (such as sex work) and re-traumatising experiences are minimised. We would also like to be given a choice of being seen by female professionals instead of male professionals.

Our experts by experience feel that being listened to by a professional is crucial, but there’s a difference between being listened to and actually being heard.

Women experiencing MCN feel underrepresented and sometimes ignored or belittled. There are currently lots of gaps and barriers when trying to provide a person-centred health service. 

In contrast to the 96.9% of women who shared their own experience via the online consultation, our client group also faces digital exclusion and we feel that their voice has been left out.

We are happy to see the acknowledgement of stigma and taboo in the new Vision document but we strongly feel that trauma informed training needs to be rolled out across the healthcare system, not only in connection with Violence Against Women and Girls specific services/aspects of the healthcare system.

B) Healthcare Policies and Services:

Our clients and experts by experience would like to see a more flexible appointment system and walk-in clinics for women experiencing MCN. One of our experts points out that ‘GP surgeries should ditch using Covid as an excuse for failing of health services. We need a new approach and start again.’ The real issue for our clients is accessibility. This can’t be overlooked. If you can’t get through the GP’s door, then health outcomes won’t be improved.

We appreciate that ‘Ensuring equitable access to services and reducing disparities in health outcomes’ between women is now on the government’s radar and geographic disparity and women with disabilities are mentioned.

We are, however, concerned that women experiencing MCN, or multiple disadvantages, have not been named as a population category itself. It is often difficult for our clients to make appointments with GP surgeries by a certain time and day, which is exacerbated by feelings of not deserving help. In our experience, especially in Eastbourne since the closure of the walk-in clinic, it is extremely difficult to get through to GP surgeries, and if so, many of our experts by experience report difficulties ‘getting past’ receptionists who can appear to act as gatekeepers.

We welcome the life course approach of the vision document but feel that links between services are missing, especially when it comes to some of the potential links between the Mental Health Act, Mental Capacity Act, the VAWG Strategy and the Women’s Health strategy. We would like to see resource being directed to link us these strategies at a national level.

Our recently published mortality report shows that our clients experience on average at least 7 long-term health conditions which can lead to early deaths. We need policies that are fit for purpose and interconnected. We also call for a joined-up approach between support services within primary and secondary healthcare but also the third sector.

C) Information and Education

In our experience, women experiencing MCN are linked in with a variety of systems and services: the prison system, alcohol and substance misuse services, adult social care, domestic abuse and the physical and mental health services. The one commonality though is women are left feeling that these systems operate in isolation and information is not being shared.

This is two-fold:

  • Information about the clients is not being shared across services effectively and our clients need to consistently repeat their stories which can be re-traumatising;
  • Health information is not being shared between services and systems. Trusted relationships, such as key workers, might be outside of the clinical healthcare system but are crucial to provide support, information and education to clients.

We appreciate that there is an acknowledgement of education and training for healthcare professionals on specific physical and mental health issues being needed in the Vision, but we would also like to see training on trauma informed approached and a less siloed approach between physical and mental health as well as the wider NHS services, adult social care and the third sector.

D) Health in the workplace

FLSE has employed a total of 41 individuals with lived experience of MCN, through its employment programme. You can read our findings from the employees’ perspective here and the employers’ point of view here.  

We would encourage greater attention on supporting the health and wellbeing of those with experiences of multiple and complex needs in the workplace and see this support as an enabling factor, helping people with lived experiences re-enter the workplace as well as supporting their health and wellbeing.

E) Research, evidence and data

Due to the high complexity of clients, we call for an open-ended, tailored and individualised approach. We believe that the healthcare system unfortunately is not always prepared to support women who experience multiple and complex needs or reach out and include them in research studies. FLSE would welcome a new, more collaborative and inclusive way of working to enhance the reach of research because historically women experiencing MCN have been under-represented in data and research.

Our project’s Research and Evaluation Officer has produced a toolkit to support researchers with practical advice and tips on applying the principles of trauma-informed practice to their research activities, specifically running focus groups, one-to-one interviews, and service observations. It is suitable for evaluators, researchers, service leads, commissioners, or anyone who would like to find out more about the experiences of people who may have been affected by trauma. This can be found here.

  1. OUR CONCLUSION AND BEST HOPES

In our experience, the key to providing better healthcare to women experiencing MCN is accessibility and flexibility. This is also supported by the King’s Fund ‘Interventions to tackle health inequalities need to reflect the complexity of how health inequalities are created and perpetuated, otherwise they could be ineffective or even counterproductive.’

FLSE is based in Brighton and East Sussex which means that our clients have worse health outcomes due to coastal inequalities, than in other areas as explained by Chief Medical Officer Prof.Chris Whitty’s annual report 2021.

Nonetheless, we hope that our contribution to the call for evidence for the Women’s Health Strategy will contribute to a better system for women experiencing multiple and complex needs.

That is why our best hopes for the Women’s Health Strategy are that:

  • Multiple and complex needs is recognised as a population category in itself, alongside disabilities and minorities.
  • There is recognition that some of the listed priorities (such as gynaecological health) can be traumatising or re-traumatising for women who have experienced certain forms of abuse and women experiencing/who have experienced MCN. As a result, high quality trauma informed training needs to be provided to all healthcare staff (incl.GP receptionists) and that the training includes the voices of lived experience.
  • The different strategies (such as VAWG, Mental Health Act, Mental Capacity Act) are linked together and find a systemic way to collaborate more efficiently.
  • The life course approach to include social determinants of health, as well as more joined up working, so that we move away from a focus on singular health issues, towards more joined up approaches to complex health conditions such as coexisting conditions mental ill health and substance use.

With kind regards,

The Fulfilling Lives South East team


Authors:

Michaela Rossmann, Systems Change Officer

Rebecca Rieley, Systems Change Lead

For further information about Fulfilling Lives work in this area, please contact:

rebecca.rieley@sefulfillinglives.org.uk  

michaela.rossmann@sefulfillinglives.org.uk

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Reflecting on women’s health on International Women’s Day  


Working alongside clients with multiple and complex needs (MCN) / multiple disadvantage has shown us that the vast majority have a physical health problem or problems. Many have a combination of long-term chronic conditions such as liver cirrhosis, hepatitis C, diabetes and circulatory diseases. The female clients we have worked with have more complex and chronic conditions compared to men. A number of factors contribute to this, including the impact of domestic abuse and violence, as well as the stress on the body from rough sleeping. The average life expectancy nationally of homeless people is low – for men this is 47 years of age, for women this is 43 years of age.

Our recent research into the deaths of people facing multiple disadvantage who were supported by Fulfilling Lives South East (FLSE) over the past seven years, supported national research findings that individuals facing multiple disadvantage are more likely to experience premature death compared with the general population (Aldridge, 2018). With some of the most complex cases, FLSE had the highest mortality rate across the national programme. Restricted access to healthcare is a recurring theme in our casework.

This recent research captured in our How can we avoid treatable or preventable deaths of people facing multiple disadvantage? found that:

• Of all the Fulfilling Lives South East clients who died in hospital of preventable or treatable conditions; 75% were women (6 clients), compared with 25% who were men (one client).

• Of all the FLSE female clients who died, 100% were from preventable or treatable causes in hospital, without inquest or further investigation.

• The average age when clients died was slightly higher for women (42 years), compared with men (41 years)

What does this mean about healthcare for women who face multiple disadvantage? As women, do they experience additional levels of health inequalities?

Our project believes that women facing multiple disadvantage are more likely to have more complex health issues and are more at risk of premature death. Our client work suggests the healthcare system struggles to meet their needs even more so than men facing multiple disadvantage. Our case studies highlight the complex trauma experienced by women who received support from across FLSE, culminating in very complex health needs. This evidence clearly illustrates why women’s specific healthcare services are paramount and could ultimately reduce or prevent premature deaths of women facing multiple disadvantage.

The National Women’s Health Strategy

In June 2021 FLSE fed into the government’s ‘Women’s Health Strategy Review’. It was recognised by the Secretary of State for Health and Social Care that, “For generations, women have lived with a health and care system that is mostly designed by men, for men.”

In response, we recommended support for:

• Women only spaces in healthcare settings, such as sexual health clinics.

• Specialised healthcare services for women with MCN.

• Making appointments should be flexible (not only online or phone) and offer walk-in clinics.

• The frailty score should be used for women (and men) with MCN to offer healthcare services more quickly, using the ‘Edmonton Frail Scale’ (Rolfson et al., 2000).

• Making trauma-informed approaches training compulsory to all healthcare professionals.

• Improved coordination of support services for those with comorbid mental health and substance misuse conditions.

We have further fed into the discussion about the future Women’s Health Strategy. At the end of 2021, the Government released details of its Vision for the Women’s Health Strategy for England, informed by feedback received in the call for evidence.

We have reflected on this Vision as a team and welcome some of its strategic intentions, particularly to shape services by taking a ‘life course approach’. However, there are some areas we feel need strengthening to better meet the needs of women with MCN. We have shared these reflections with the Maria Caulfield MP for Lewes who is leading the development of the Women’s Health Strategy.

Key reflections on the Vision for Women’s Health Strategy include:

Women’s Voices: We are happy to see the acknowledgement of stigma and taboo in the new Vision document but we strongly feel that trauma informed training needs to be rolled out across the healthcare system, not only in connection with Violence Against Women and Girls specific services/aspects of the healthcare system.

Healthcare Policies and Services: We welcome the life course approach of the vision document but feel that links between services are missing, especially when it comes to some of the potential links between the Mental Health Act, Mental Capacity Act, the VAWG Strategy and the Women’s Health strategy. We would like to see resource being directed to link us these strategies at a national level.

Information and Education: In our experience, women experiencing MCN are linked in with a variety of systems and services: the prison system, alcohol and substance misuse services, adult social care, domestic abuse and the physical and mental health services. The one commonality though is women are left feeling that these systems operate in isolation and information is not being shared. We would like to see training on trauma informed approaches to promote shared language and approach to healthcare services that could enable a less siloed approach between physical and mental health as well as the wider NHS services, adult social care and the third sector.

Health in the workplace: We would encourage greater attention on supporting the health and wellbeing of those with experiences of MCN in the workplace and see this support as an enabling factor, helping people with lived experiences re-enter the workplace as well as supporting their health and wellbeing.

Research, evidence and data: Due to the high complexity of clients, we call for an open-ended, tailored and individualised approach. We believe that the healthcare system unfortunately is not always prepared to support women who experience MCN or reach out and include them in research studies. FLSE would welcome a new, more collaborative and inclusive way of working to enhance the reach of research because historically women experiencing MCN have been under-represented in data and research as such are often missed out of policies and strategies.

Our best hopes for women’s health  

In our experience, the key to providing better healthcare to women experiencing MCN is accessibility and flexibility. This is also supported by the King’s Fund ‘Interventions to tackle health inequalities need to reflect the complexity of how health inequalities are created and perpetuated, otherwise they could be ineffective or even counterproductive.’

FLSE is based in Brighton and East Sussex which means that our clients have worse health outcomes due to coastal inequalities, than in other areas as explained by Chief Medical Officer Prof.Chris Whitty’s annual report 2021.

Nonetheless, we hope that our recent contribution to the call for evidence for the Women’s Health Strategy will contribute to a better system for women experiencing MCN.

That is why our best hopes for the Women’s Health Strategy are that:

  • MCN is recognised as a population category in itself, alongside disabilities and minorities.
  • There is recognition that some of the listed priorities (such as gynaecological health) can be traumatising or re-traumatising for women who have experienced certain forms of abuse and women experiencing/who have experienced MCN. As a result, high quality trauma informed training needs to be provided to all healthcare staff (incl.GP receptionists) and that the training includes the voices of lived experience.
  • The different strategies (such as VAWG, Mental Health Act, Mental Capacity Act) are linked together and find a systemic way to collaborate more efficiently.
  • The life course approach to include social determinants of health, as well as more joined up working, so that we move away from a focus on singular health issues, towards more joined up approaches to complex health conditions such as coexisting conditions mental ill health and substance use.

Authors:

Rebecca Rieley, Systems Change Lead

Michaela Rossmann, Systems Change Officer

For further information about Fulfilling Lives work in this area, please contact:

Rebecca Rieley, Systems Change Lead:

rebecca.rieley@sefulfillinglives.org.uk  

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Finding Bright Spots in Primary Healthcare 

Our clients’ journeys and experts by experience have highlighted that access points to the primary healthcare system are challenging for people with multiple and complex needs (MCN). These challenges grew for many during the start of the Covid-19 pandemic and at Fulfilling Lives South East (FLSE) we could also see the stresses and strains the system was trying to manage during 2020-21. 


As a project, we knew that there are amazing healthcare services out there supporting people with MCN but we didn’t know exactly what separates those services from the mainstream ones. We wanted to better understand what enables people with MCN to access primary healthcare, and what constitutes as ‘good’.

So, we created a sub-group across our internal teams and experts by experience. Together, we developed our criteria for services that could be described as ‘good’ in enabling people with MCN to access primary healthcare services and engage with healthcare support. These criteria helped us decide who to interview and who we could learn from.  

The criteria were:

  • Flexibility 
  • A caring attitude 
  • Professionalism 
  • Continuity, consistency and collaboration 
  • Trauma-informed practice 
  • Psychologically informed environments 

The group then identified the following four services across Sussex that [IH1] [MR2] encompass these criteria – these became our ‘Bright Spots’ in the system.

The FLSE sub-group was keen to follow robust research processes to better understand and learn from these four services.  That is why we used the Positive Deviance model as our main approach and the Appreciative Enquiry model to conduct our four separate interviews.

The interviews we conducted with ARCH Healthcare, Seaview, St. John Ambulance and the Rough Sleeper Initiative made it clear that there are recurrent issues across the healthcare services in Sussex. Some of them include lack of flexibility, being siloed and under-resourced. Our four Bright Spots services have also identified common practices that enable community and healthcare services to be efficient and effective for people experiencing MCN. Organisations, no matter how big or small they are, need to collaborate with each other, provide multi-disciplinary teams and put people they support at the centre of everything they do.

The Bright Spots

The four Bright Spots had shared views on the top three ways to improve health services for people with MCN:


1) bring the services to them in a flexible way;
‘We really recognise that it’s not the easiest thing for clients to attend booked appointments. So, we are trying to make it as flexible as possible for them. Our day centre is also open on weekends when other services are closed.’ Dave Perry, Chief Officer, Seaview.

2) a collaborative approach between services (not just signposting);
‘Multi-disciplinary drop-ins have allowed the team to work informally with individuals and to engage with historically hard-to-reach groups on their own terms.’ Becky Jackson, County Coordinator, RSI.

3) invest in staff, training and resources
For Roger Nutall at St.John’s ‘both, debriefing and training, is to make sure that the team has time and space for reflections in order to learn from each other, find solutions as well as gain new skills.’ Gary Bishop from ARCH Healthcare agrees and says that ‘(we) understand the importance of recruiting the right people for the job. (Our) workforce receives coaching, mentoring and supervision.’

At FLSE, we strongly believe in the power of partnership. We also believe that the role of commissioners is to nurture systems change and help services develop more accessible, responsive, flexible and coordinated approaches for those with the most complex needs. 

We understand that due to Covid-19 and resource constraints, the health system is currently overburdened and treatment waiting times are increasing. 

Recommendations:

We do think though that there are quick wins which could be implemented in the short term by commissioners and healthcare providers to improve access to primary healthcare for people with MCN. These have been informed by our Bright Spots learning and are shared below in a  set of recommendations: 

  1. Investing in existing services with long term funding 

We already have four very different Bright Spot services in Sussex and think that the first step is to expand and replicate services which are already working well for our clients. Continuity is a crucial element for our clients to start trusting services and only long-term funding and investing in staff members can help with that.

2. Putting people first 

We need a cultural shift towards a trauma-informed system for patients, volunteers, experts by experience and staff members. This approach in turn will help facilitate more agile, multi-disciplinary collaborations.

3. Building relationships 

Building trust, taking time to invest in relationships and connecting with patients, agencies and teams can improve care for patients. It’s about creating a community of best practice, learning from each other and sharing information. With this in mind, we advocate for the concept and practice of co-production  to be introduced in primary healthcare settings to inform service design and delivery. 

4. Offering choices 

Our Bright Spots have identified that for people with MCN, a mix of contact-points is needed which include in-person appointments, phone calls, texting, outreach, mobile healthcare support out in the community, and access at weekends.
We would like current and future services to include a variety of engagement options as a standard way of working with people experiencing MCN, led by staff teams that are enabled to offer support in flexible ways. 

Therefore, we would like to call on commissioners and decision makers to include the above set of recommendations in any future funded service that aims to improve the health and wellbeing of people with MCN.

Read the full report here: ‘Bright Spots’: What enables people with multiple and complex needs to access primary healthcare?


Authors:

Michaela Rossmann, Systems Change Officer

Ian Harrison, Engagement and Coproduction Worker

For further information about Fulfilling Lives work in this area, please contact:

Rebecca Rieley, Systems Change Lead:

rebecca.rieley@sefulfillinglives.org.uk  

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Mental Health Act review- the Government’s responses and our feedback


In April 2021, the Fulfilling Lives South East (FLSE) team responded to the government’s Mental Health Act review and published a blog detailing our responses and thoughts.

We called for:

  1. A commitment to invest in local mental health support services.
  2. The Advance Choice Document to include a Nominated Person instead of next of kin.
  3. To offer more advocacy support, ideally peer led, to help patients’ voices be heard.
  4. The new guiding principles of choice and autonomy, least restriction, therapeutic benefit and the person as an individual to be integrated in day-to-day work.
  5. Trauma informed practice training to be introduced to all staff members.
  6. MCN and co-existing conditions to be recognised as a specific category.

1,700 organisations and individuals UK wide submitted their responses to the government, and it is reassuring to see that the majority of responses reflect our recommendations and suggestions.

The government reflected on how this wide-scale review had generated useful learning: ‘In 2017 the government asked for an independent review of the Mental Health Act 1983 (MHA), to look at how it’s used and to suggest ways to improve it. The review’s final report said that the MHA does not always work as well as it should for patients, their families and their carers. We’re now proposing a wide range of changes to rebalance the MHA, to put patients at the centre of decisions about their own care and ensure everyone is treated equally.’

Matt Hancock, Health and Social Care Secretary from January 2021 said in an oral statement to Parliament that ‘(…) this programme of transformation is ambitious and as we support mental health services now, so we must bring up to date the legislative framework also for the long term. The Mental Health Act was created so people who have severe mental illnesses and present a risk to themselves, or others, can be detained and treated. For their protection and the protection of those around them. But so much has changed since the act was put in place, nearly 40 years ago.’

Following the Consultation on the Bill between January and April 2021, the revised Act was released in October 2021.

Our Reflections

The FLSE team has since reviewed and reflected on this new content and would like to share our reflections below.

  • We welcome the introduction of the Advance Choice Document which focuses on facilitating patients’ recovery and patients with capacity to be able to refuse treatment, for their wishes to be respected and for the Mental Health Tribunal judge to give orders for treatments not to be given.  
    As set out in the White Paper, the government will take forward legislative changes to replace the Nearest Relative role with the Nominated Person role so that individuals can choose who represents them. 
  • Co-production and working with service users and carers is critical to the quality of advocacy services. 
    As set out in the White Paper, the government will take forward legislative changes to extend eligibility of Independent MH Advocate (IMHA) services to all mental health inpatients which means that their voices are being heard.
    The government will further explore with stakeholders the best way to improve the quality of IMHA services, whether through enhanced standards, accreditation, regulation, or increased training requirements. The government will continue to prioritise the development of culturally appropriate advocacy and work with stakeholders to ensure that ethnic minority backgrounds are considered as the reforms are implemented. 
  • The government is reviewing their position on the proposed time requirement for health and local authorities to deliver on directions made by the MHT, as a five-week timeframe might not be sufficient for those patients who require a complex care package. 
    We agree that there needs to be a focus on services in local communities (statutory and third sector alike) and for them to collaborate.
  • It is the government’s intention to take forward the proposals to increase the frequency of automatic referrals to the Tribunal as there have been concerns that some patients may never have access to a Tribunal hearing if automatic referrals are removed and that some patients “falling through the cracks.” 

There has been an acknowledgement that further development of the White Paper is needed when it comes to people with learning disabilities and autistic people and a commitment to discuss this further with an expert group. The need for appropriate community services was a common theme across responses to all of the learning disability and autism proposals. 

There are a number of areas that we believe remain unaddressed in the Act’s revisions:

  • We would very much like to get clarification on the type of training staff members will receive and how co-production is ensured across the system, not just advocacy services.
  • We are disappointed that ‘multiple and complex needs’ or ‘multiple disadvantages’ are not named and seen as a separate category in the MH Act.
  • It is also unclear what the commitment is to extra resources, funding and a timeline to implement these changes.

Reform

There is a commitment from the government to take the proposed changes further, which includes stakeholder engagement and individuals with lived experience saying that ‘The proposals made in the White Paper represent once in a generation reforms to the Mental Health Act (…). Our job is now to continue to develop a new Bill to reform the Mental Health Act. We have listened, we will continue to listen, and we will deliver on enacting mental health legislation fit for the 21st century – legislation which will provide for the protections and support for people with severe mental health needs, which will strengthen their voice, choice and rights, support the increased use of community alternatives to hospital, will limit the use of the Act for people with learning difficulties or autistic people, will improve support for offenders with acute mental disorders, and which will aim to address the racial disparities that have too long been part of the way the Act has been used.’

The Rt Hon Sajid Javid MP Secretary of State for Health and Social Care
The Rt Hon Robert Buckland MP Secretary of State for Justice


As it stands, there is no fixed timeline or secured funding to implement said changes, saying that ‘We intend to bring forward a Mental Health Bill, which will give effect to many of the changes we wish to make, when parliamentary time allows.’  We look forward to hearing more about concrete implementations of the White Paper soon.

The full government responses can be found here: 

Reforming the Mental Health Act – GOV.UK (www.gov.uk)


Authors:

Ian Harrison, Engagement and Coproduction Worker

Michaela Rossmann, Systems Change Officer

Rebecca Rieley, Systems Change Lead

For further information about Fulfilling Lives work in this area, please contact:

Rebecca Rieley, Systems Change Lead:

rebecca.rieley@sefulfillinglives.org.uk  

For more information sign up to our newsletter:

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Lived experience as an asset

In our blog post of 13th December titled “Employment and the road to recovery” we looked at why employment is so important to people with lived experience of multiple complex needs (MCN) and the difference it can make to people’s lives.


In this, the next blog in the series sharing the learning from our employment programme, we wanted to take a look from the other perspective, that of the employer.  As we talked about in our previous blog post, it’s not all a one-way street and the benefits to an employer in the recovery and support sector can be huge, having a very positive impact on the organisation, the service being provided and the whole staff team.

What are we talking about though? What do we mean by benefits to an employer?  After all, any member of staff you employ brings benefits, right! That’s why you employed them in the first place.

Well, what we’re talking about here is the unique perspective and set of skills that people with lived experience of MCN often bring to the table, in addition to the skills, experience and abilities they have specifically relating to the role.  

Quote from Nelida, our Service User Engagement Co-ordinator:

“For us, at FLSE, employing people who had experienced multiple and complex needs was essential to achieve our outcome of embedding co-production and to role model service user involvement in the wider system. Having lived experience is an asset when working with people with support needs.

For far too long, there has been a divide in services between ‘professionals’ and ‘service users’, when life, (as needs and vulnerabilities), is much more complex than that. We do not live in silos where someone is either in need or a professional…

Our Engagement Workers have helped us develop a more open way of working, that breaks down barriers built in services by limiting labels. This argument does not undermine the work that many people who have not used support services do; the ability to empathise goes beyond having experienced the same problems, however, in my experience, there are certain gains that can only be achieved by having lived experience. Some examples include: acting as role models, being an aspiration and an inspiration for others that have lost faith in the system.

They/we are also an asset when engaging with people who may be finding it difficult to connect with ‘only professionals’ in services. In our case, they have also been crucial in supporting system change, as these cannot improve without the input of those who have first-hand experience. 

For me, the next step in tackling the stigma that people with complex needs experience is to model openness throughout organisations and systems, leading up to having people with lived experience of using services in top decision-making roles, and most importantly this being acknowledged and recognised as an asset.”

Key benefits for the employer and organisation

Employees with lived experience can offer a unique insight into service user experience – a knowledge of the system/services as experienced from the inside.

This is the ‘service user experience’ of your organisation that cannot be taught. They know the system or the services as experienced from being within it, travelling through it and even how it feels to be lost and trying to navigate it. They can empathise from a unique perspective and there is a shared understanding and knowing that cannot be gained through training and research. The added positive is that they can also show clients how to do that too.

“Working with someone as a peer really gives us a unique point of contact. Everyone is an individual on their unique path, and we may have different experiences and feelings about those experiences, but we both know what it can be like to experience and work to overcome complex issues in our lives.”

Co-production and Engagement Worker

Clients may be able to trust a service that employs people with lived experience more easily. 

By employing people with lived experience, it can create a sense for the client that the service is “on their side’ and really understands them. It also helps to break down the ‘them and us’ imbalance within services.

Employees with lived experience are often able to become a bridge between the client and the service.

They are able to meet the client where they are, in an authentic way, taking into account their language, behaviour and how they are expressing themselves. They are then able to relay that to the service in a way that both parties can feel heard and understood; like having a mediator who can understand both ‘languages’.

Employees with lived experience of MCN have often carried out a lot of self-reflection and work on themselves and their relationships with others to become ready for employment. 

They have had to be very honest with themselves about where they are at and what they need to work through, they will have good self-care and emotional intelligence in relation to work, they will have learnt how to be assertive and how to look after themselves.  Not only are these valuable assets for an employee to have but also provide great role-modelling when working with clients.

Employees with lived experience of MCN tend to have an enhanced ability to connect with clients.

They’re able to connect in a professional and properly boundaried way but without being clinical, with empathetic mannerisms and approaches and have more of an awareness of not speaking in abbreviations or acronyms.

Employees with lived experience of MCN often have enhanced patience and belief in clients, including when they are struggling – They bring hope when it may feel as if there is none.  

They know what it’s like to be where the clients are now and they also know and can demonstrate that change is possible.

“In the ‘bad times’ of MCN it can feel like you’ll never get anywhere and moving forward is impossible.  In those times it’s important to meet people with lived experience who are in a good place, who have been where you are and come out of the other side and not only that, can guide you to do the same and support you on that journey”

Co-production and Engagement Worker

It’s not just in our project either… we checked!

Just to be sure that all of these benefits aren’t unique to the BHT Fulfilling Lives SE project we checked with another project working in the field – Hastings Young People’s Service providing supported accommodation for young people in Hastings, East Sussex.  

Here’s what Simon, their Senior Manager said:

“Here at Hastings Young Peoples Service, we recognise the importance of lived experience when working with clients with a range of complex needs, that is why we actively recruit new staff and volunteers who have this to call upon. Although not all staff will have this they still provide excellent support with innate skills around empathy and understanding. Any areas in their knowledge that are lacking can be mitigated by appropriate training, in the case of understanding the clients’ journey, this would be in PIE and TIC.

However, the value of experience, to be able to reflect first hand how complex needs affected their lives and what aspects of support they wished were available at the time, is invaluable. Colleagues who have lived experience operate with a greater degree of empathy, enthusiasm and motivation. They are able to pick up on the subtle nuances of behaviour that can lead to earlier intervention of vital support.

To date we have 6 members of the team who have lived experience across a range of complex needs including homelessness, mental health issues and substance misuse. All of them are valued and crucial to the success of the service”.

So…if you don’t already, isn’t it about time you considered employing more people with lived experience of MCN?

In our series of blogs around employing people with lived experience of MCN, of which this is the second, we want to unpick some of the key elements and practices that make employment successful, both for the employee and for the employer.

We are also currently creating a resource for employers around employing people with lived experience of MCN and how to do it well. If you would like a copy of this resource once it’s published, please contact andree.ralph@sefulfillinglives.org.uk  or nelida.senoran-martin@sefulfillinglives.org.uk


Author: Andree Ralph

For more information please email:

Andree.Ralph@sefulfillinglives.org.uk

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Developing standards in emergency and temporary accommodation

Collaborating across the voluntary sector, private sector and the local authority to improve accommodation offers for people needing emergency accommodation


During the COVID-19 pandemic the already high demand for emergency accommodation has risen acutely, and the ‘Everyone In’ initiative brought to the public’s attention the large numbers of people needing safe accommodation spaces. However, emergency accommodation, and often temporary accommodation, options are largely unsupported and largely unregulated spaces and throughout Fulfilling Lives’ work across Brighton and & Hove and East Sussex, we have seen and listened to stories that demonstrate how people experiencing the vulnerability and disruption of homelessness are frequently left unsupported and living in substandard conditions.

Recent figures published in a research briefing by the House of Commons Library show that by the end of March 2021, there were 95,450 households in temporary accommodation, almost the highest number in two decades. Case studies published in Fulfilling Lives’ Manifesto for Change highlight how people experiencing multiple and complex needs in temporary accommodation will often have a lack of information about their rights and responsibilities as residents and be placed in properties managed by staff who are not trained to accommodate/work with people with complex needs. The TA provider is also often unaware of the needs and risks of clients due to restricted information sharing between providers and local authorities and for some TA providers, an absence of joint working with existing support services. Issues around safety have frequently been reported in Fulfilling Lives casework, in particular the prevalence of gender-based violence in temporary and emergency accommodation, where our female clients have reported experiences of sexual abuse and exploitation from male residents.

“I can never sleep. I wedge a chair in front of my door to stop anyone from getting in but I sit waiting for the door to be kicked in.”

Fulfilling Lives client

Setting out standards

As part of Fulfilling Lives work on improving support for people with multiple and complex needs who are experiencing homelessness, a Charter setting out a reasonable standard of emergency accommodation has been developed in collaboration with Justlife and the Brighton & Hove Temporary Accommodation Action Group (‘TAAG’).

The Charter recognises that a significant amount of people placed in emergency accommodation will have multiple and complex needs and as a result will require additional support. To meet these needs and to ensure that the standards of accommodation provided are acceptable, the Charter calls for;

– Clear information regarding the emergency accommodation placement to be given to residents.

– Collaborative working between the local authority, providers, support services and residents so that they have the best possible access to support.

– For accommodation staff to be trained with a focus on safeguarding, Multiple and Complex Needs awareness and trauma informed care (TIC) and Psychologically Informed Environments (PIE) approaches.

– For providers to maintain an approach, behaviour and commitment to ensure the conditions of their properties are at a reasonable standard consistently and that residents have the best possible chance of moving on from homelessness.

The origins of the Charter

The document builds on the Charter developed by the Eastbourne Citizens Advice and the East Sussex Temporary Accommodation Action Group (‘TAAG’). The Eastbourne Citizens Advice team conducted research into local emergency and temporary accommodation, interviewing residents and recording their experiences of living in these forms of accommodation. The feedback shone a light on some worrying practices, building issues, and environments that the team felt could be interpreted into the Charter of standards. This was supported by members of the East Sussex TAAG and verbally supported by the local authorities.

The Charter for Brighton & Hove has been tailored from the East Sussex version to speak to the local needs. It has been developed from Fulfilling Lives, Justlife and other TAAG members’ work with hundreds of people placed in emergency accommodation over the past 7 years.

Adopting the Charter for Brighton & Hove

After working closely with local Temporary Accommodation Action Groups and discussion about the adoption of the Charter with local authority housing departments, we were pleased the most recent Brighton and Hove Housing Committee heard that –

“The next emergency accommodation contract will both include higher standards aligned to the emergency accommodation charter and will for the first time be awarded 50% on quality and 50% on cost. To allow this to happen, the 2021/21 budget includes £0.230m extra investment to enhance the level of service in the re-procurement of emergency accommodation. We hope this will lead to improvement in both conditions and practice.”

The adoption of the Charter offers a contractual framework to set out clearly to providers the standards the city requires for emergency accommodation and also holds providers to account, providing a basis for sustainable accountability to these standards of accommodation. This is a significant step towards improving the physical and emotional wellbeing of those placed in emergency accommodation and is an example of systems change work in practice.

‘Justlife welcomes the adoption of many aspects of the charter within the new emergency accommodation contract. We hope that the new contract will improve the experience for clients in EA, drive up standards and provide more choice in the city.’

Martin Coll, Justlife

However, there is still more to be done. With Eastbourne due to release its new Service Level Agreements (SLAs) for Temporary Accommodation providers, we hope to see the embedding of the Charter standards within these contracts too.

Reflections

The Charter is a document that captures and addresses the recurring issues we see in temporary accommodation. Health and Safety Regulations and HMO licences fall short of recognising the vulnerability and additional support required by those experiencing multiple disadvantage, therefore we feel it is vital that all elements of the Charter are included within council contracts with providers, and would like to highlight the following recommendations –

– TA providers to be required to work in collaboration with support agencies that may be involved with clients and to attend relevant action groups.

– A commitment from the local authority to gather feedback from residents about their accommodation.

– Inspections from the local authority of properties must take place regularly.

– A person with lived experience of emergency accommodation and a representative with learned experience from a voluntary sector group on behalf on the Temporary Accommodation Action Group (TAAG) should take part in inspections, contract meetings and gathering feedback from residents. This should all be reported back to the TAAG.

The feedback of experts by experience is essential in building services that truly work for the people who use them and formally embed accountability for providers. Involvement with wider services and in conversations around temporary accommodation ensure that support for people living in TA is consistent and is proactive in helping people move onto long term accommodation.

Fulfilling Lives welcomes the changes made by Brighton and Hove City Council and look forward to further changes across the sector and region that reflect the higher standards of temporary and emergency accommodation as captured in the Charter.


Authors: Eve McCallam

Resources: The Brighton & Hove Charter

For more information please email:

Eve McCallam, Systems Change Officer: charlotte.cooke@sefulfillinglives.org.uk

Or Charlotte Cooke, Research Officer: charlotte.cooke@bht.org.uk

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High Mortality Rates within the Multiple Disadvantage Community

We review a report that highlights the deaths of people facing multiple disadvantage whilst supported by the Fulfilling Lives South East programme.


Introduction

It can be challenging to think and talk about death, to approach it with sensitivity and dignity whilst at the same time avoiding shying away from the topic. We may be familiar with the statistics that state the average life expectancy for the general population in the UK is at 79 years for males and 83 years for females. The distinct reality is that for people with multiple and complex needs (MCN), the picture is starkly different: life expectancy is at about 42 years for men and 43 for women. There are national studies available on why mortality rates are high within this group, however our own experiences as a service have compelled us to review the situation here in the South East of England.

The Current Landscape

There’s an element of ‘normalisation of death’ within the community of people who have multiple and complex needs. It’s a common occurrence that is often no longer surprising or shocking. Relatively high numbers of people experiencing severe multiple disadvantage, some of the most vulnerable in our community, are dying at a young age. These statistics are far from normal and we believe shouldn’t be viewed as such. At Fulfilling Lives South East (FLSE) we have provided intensive support for people experiencing multiple disadvantage and during this process, clients that we had worked with have died, some at home, some at hospital. As part of our legacy and review of the project we took a closer look into the deaths of our clients. What was happening here, were there any indications or signs that could have been spotted, how (if possible) can we stop this from happening in the future?

Within Sussex (Brighton & Hove, Hastings, and Eastbourne) a higher percentage of clients died whilst in our service compared to the national average (13% of FLSE clients versus 6% within similar MCN programmes nationally). We felt it was important to ask, comparatively, how was it that so many people are dying so young? We know that there are higher rates of deprivation amongst coastal communities. This goes some way to explain perhaps why rates in Brighton and Hove are higher than the national average.

We have produced a report that focuses on clients who died in hospital from ‘natural causes’, as there were no unusual circumstances reported. These natural causes however were due to illnesses related to long term alcohol and substance use, which with the appropriate support could have been avoided. We look closely on the treatable or preventable interventions steps that could have taken place. As well as the barriers around effective prevention, we also shine a light on good practices within progressive initiatives locally. Based on our experience and knowledge we knew we had to respond to the issues raised and highlight some key recommendations aimed at local authorities and healthcare services.

What We Found

The three main themes which ran across this client group based on our analysis were:

• Restricted healthcare access

• Lack of women’s healthcare

• Negative hospital experiences

Through in-depth analysis we found that restricted access to healthcare was a recurring theme in our casework. People experiencing multiple disadvantage often have problems accessing GP and outpatient appointments. For example, those who have had previous violent or aggressive episodes in a healthcare environment would be placed on a ‘Special Patients Scheme’ severely restricting healthcare future access (the system is under review). Additionally, when experiencing daily challenges and chaos in your life (as clients often face), making and attending a GP appointment with a pre-determined time slot is not always easy to stick to.

We also found that MCN clients have multiple long-term chronic conditions, with female clients experiencing more complex and chronic conditions compared to men, and that women are more at risk of premature death. Treatment for women is currently the same as it is for men. But with these glaring variances in health conditions, it should come as no surprise that FLSE along with many other support services have been arguing for women’s specific services for many years.

Finally, we found that negative hospital experiences are commonplace, and amongst those clients that died, our case notes show that the clients faced dismissive, apathetic and a one-size-fits-all type of response. What they required was a more patient, trauma-informed approach. There appears to be an element of being stigmatised that can be extremely unhelpful. In addition to negative encounters, when clients are discharged from hospital there’s a lack of communication between the healthcare providers and the support services clients transition to. These services need to pick up support without the visibility or clarity of what’s really going on with the client both physically and mentally.

Recommendations & Reflections

The top 3 tips to improve health services for people with MCN are:

  1. Providing services in a flexible way
  2. A collaborative approach between services (not just signposting)
  3. Investment in staff training and resources

The Brighton & Hove, Eastbourne and Hastings area has a number of healthcare providers that have been identified as sources of ‘good’ support. Their strategies included:

  • being more flexible with regards to access,
  • providing effective training,
  • offering a more human, kind and trauma-informed approach, and
  • involving people with lived experience to give feedback on both strong and inappropriate practices.

We strongly advocate for women-only spaces or women-specific provisions rather than the default status quo of a health and care system that one could argue is mostly designed by men, for men.

Finally, we highlight an inclusive and beneficial initiative called the Intermediate Care Step Away Project which is committed to ensure that when people with MCN enter hospital, they experience support that meets their multiple needs and that they consistently experience a discharge that includes the follow-up community care needed.

Read our detailed report HERE which fully explores the situation and includes reflections from a Clinical Services Manager and Nurse Lead, and case studies which demonstrate the reality of client journeys.


Authors: Nisha Vesuwala

Resources: How can we avoid treatable or preventable deaths of people facing multiple disadvantage?

For more information on this work please email:

charlotte.cooke@sefulfillinglives.org.uk

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Hospital discharge – a road to recovery?

Reflections on the experiences of patients with complex needs and thoughts on how discharge approaches can be developed


At Fulfilling Lives South East, we’ve seen how hospital discharges can be a challenging time for patients with multiple and complex needs (‘MCN’). Our client casework has shown us how clients are often discharged to unsuitable accommodation, or to the street in the very worst of cases.  The NHS is a complex system, and in the area of discharge this complexity is compounded by the fact that there is a shared responsibility with Adult Social Care for discharge planning in complex cases.

Hospital discharge – Case example:

S is a female homeless client who had been in hospital for five weeks. She was diagnosed as suffering from endocarditis, with damage to the mitral valve, two thalamic infarcts and two cysts on the brain. At the beginning of week six, despite her being homeless, it was recommended that she be discharged and that she “go home and gain further weight and return after a month to review her health ahead of a referral for heart surgery”.

In April 2021, FLSE and the Brighton Healthwatch Hospital Discharge Project invited organisations from the Voluntary and Community Sector as well as the NHS to discuss how hospital discharge for people experiencing MCN can be improved.  The overarching themes identified were that community mental health support services are stretched and can be difficult for patients to access after hospital discharges but also that hospital discharge means different things to different organisations. We understand that the health, social and third sector are funded and set up quite differently and this runs the risk of services being fragmented which in turn contributes to the difficulties when supporting patients and clients. These difficulties include challenges around information sharing and communication between services and lack of knowledge on where to find the right support depending on referral criteria and thresholds.

At Fulfilling Lives, we have dug deeper into the processes and procedures of hospital discharge and challenged ourselves to articulate what a better hospital discharge system could look like. This involved a focus group of specialist workers who support people with multiple and complex needs, systems change staff and those with lived experiences of hospital inpatient and discharge procedures.  Our key thoughts are outlined below.  

Key Thoughts

Underpinning PrinciplesWe feel that all processes should be informed by the following principles

  • Support starts early when planning for hospital discharge with the first paramedic / GP / professional contact. These people help inform the patient’s needs and contexts that should be considered in discharge plans.
  • Treatment will be delivered in a Psychologically Informed Environment (‘PIE’) which respects privacy (i.e. no interviews in glass interview rooms) and client ‘agency’ i.e. respects the fact that the client is in the room and isn’t ‘spoken about’ as though they are not.
  • Being human   We want the best medical outcomes for clients and understand that this is best supported by recognising the humanity of the client and taking a trauma informed approach to their care and recovery.
  • Ensure that the client’s voice is heard early in the process and consistently throughout.
  • Hospital discharges for people with multiple complex needs will have clear accountability and oversight within the healthcare system.
  • Discharge planning takes patient’s outside circumstances into account and reflects their impact on health – this will require consistent consideration for health determinants not just the presenting clinical healthcare needs.
  • Recognition that in-patient treatment, including the impact of medication, can impact on a patient’s ability to make decisions.

Underpinning Behaviourswe believe that certain professionals’ behaviours enable successful hospital discharges.  

  • Demonstrating kindness and flexibility is key to providing reassurance to people with MCN who have had multiple negative experiences of support services.
  • Creating opportunities for friendly conversation is important to minimize the perception of care being perceived as ‘business like’ or the patient feeling unwanted in the hospital and helps to build trust.  The client will be alert to any signs that they are being judged in a negative way and will be at high risk of self-discharging.
  • Be mindful of one’s own stigmatising views and unconscious bias. Be aware that factors such as workplace stress and our own health and wellbeing will have an impact on our work.  Take active steps to maintain your equilibrium and expect the workplace to support your performance through supervision, reflective practice and other means.

Toolsenabling factors that will support positive hospital discharges

  • The hospital will keep details of the client’s support network.  This will include details of community-based professionals trusted by the patient to help them communicate with the hospital and likely provide care post-discharge.
  • Published policy regarding MCN patients including standards relating to discharge planning.
  • Explicit monitoring, and management of hospital discharges for patients with MCN.
  • Training in trauma informed care for staff at all levels of the hospital to support effective engagement, communication and support for patients with MCN.
  • Mechanisms for feedback that enable feedback from the voices people with lived experiences to be easily captured and learnt from with minimum bureaucracy.
  • A strategy to tackle ‘self discharges’ and unplanned exits from hospitals.

Ideas

Ideas for hospital discharge protocols – tangible practices that we feel can inform hospital discharge protocols for patients with MCN

Admission

  • Patients with Multiple and Complex Needs (MCN) should have a risk assessment and support plan to improve the prospects of the patient engaging with the full course of treatment and reduce risks of unscheduled discharge.
  • The client’s admission paperwork will include the contact details of support staff who can help the patient communicate with the hospital and articulate their views. For patients with MCN, this may include social workers, mental health nurses, GPs, probation workers and members of the voluntary sector. The ward staff are encouraged to help the patient liaise with that support network to ensure that they are included in the whole process.
  • The admission will take an overview of their housing situation, pets, family and medication. The client may need help to pack a bag or provide themselves with the things they need for a stay in hospital. 
  • In an unplanned admission the multiple and complex needs of the patient will be recorded by the Accident and Emergency team (or earlier where the patient has received an initial assessment by a paramedic) and communicated to ward staff when that patient is admitted to a ward. 
  • At admission, or preferably before, there will be an assessment of the patient’s safety and needs.  This assessment will include drug and alcohol use, issues concerning visitors and issues of domestic abuse.            
  • We would also recommend informing the patient’s GP of the hospital admission.

As mentioned in the Mental Health Act Review 2021 (Chapter 4), we support the idea of strengthening the patient’s right to refuse and choose treatment.

We would like patients to have:

  • greater influence over decisions about their care and treatment,
  • their wishes and preferences respected and followed
  • the opportunity to challenge their care and treatment if their wishes are not followed. 

FLSE would like to see an ‘advanced choice document’ across all healthcare sectors, physical and mental. With a system in place that communicates between services, information sharing is increased which in turn helps patients to feel more confident and less stigmatised.

We would strongly encourage for the healthcare system to introduce this trauma informed approach.

To read more about how we contributed to the Mental Health Act Review please see our blog post here.

Discharge

  • We would strongly suggest that prior to discharge of a person experiencing MCN, Adult Social Care is required to assess the patient’s needs. This would include closer collaboration between discharge coordinators, social workers in hospital and Adult Social Care.
  • Ideally, a multi-agency health and complex needs forum is created to discuss more vulnerable patients. This is to make sure that a support system is in place prior to discharge. This includes informing GPs and other non medical support networks of the discharge and we are aware that in Brighton & Hove there is such a forum to discuss patients with complex needs to support their care in the community – this is an approach we support.
  • In our experience, patients with MCN being discharged on a Friday is difficult. This is because there is sometimes not enough time to organize and set up support for the weekend and the accommodation they may need, especially when at risk of homelessness.
  • The patient’s GP would be notified of the discharge and given the community care/discharge plan.

Monitoring

  • There will be a specific record kept of the steps taken to include the patients voice including specific details of what they have done differently to capture innovation.
  • Patients with MCN will be recognized throughout the patient record data systems and accountability will sit with an accountable person within the hospital staff team for hospital admission and discharge of those patients with MCN.
  • There will be a loop for patients to be able to provide feedback and suggestions to improve interactions.

Hopes for the future hospital discharge system

During the Connectivity Meeting, it was clear that communication between different services (NHS, social care and the Voluntary and Community Sector) is difficult.

We discovered that hospital-based social workers don’t automatically collaborate with community based social workers and information isn’t being shared with other non-medical support networks. We also learnt that the Voluntary and Community Sector services, as well as mental health services, have long waiting lists and that their services are stretched.

The group has also identified that the different systems feel silo-ed and there are few opportunities for collaboration and smooth discharge transitions into the community.

The below was an attempt to map the different services involved in hospital discharge and how these relate to each other. It prompted us to reflect on the commissioning of services to support hospital discharges and how there is an opportunity for commissioners to improve linkages between services and help the support system organise in more joined up and efficient way.

Image showing connectivity in the system

However, the group also suggested that it would be useful to improve communication between hospital, social care and community teams by introducing joined access meetings. These meetings would focus on all aspects (medical and non-medical) of the patient’s support system and that the patient would be able to join this meeting.

Our conclusion is that the hospitals need to review their discharge protocols and develop revised ways to support patients with MCN through the system. This needs to include mechanisms for joint planning with the patient and their closest support networks.


Author: Michaela Rossmann & Rebecca Rieley