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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Empowering staff in Temporary Accommodation to best support people with Multiple Complex Needs 

The crisis in housing supply and growing numbers of people becoming homeless, has resulted in increased pressure on local authorities to source and provide temporary accommodation. Higher numbers of people with multiple and complex needs are being placed in unsupported temporary accommodation (TA) and in turn TA staff have become a key part of peoples’ journey out of homelessness.


Fulfilling Lives’ research shows that from our clients in TA, 57% of placements broke down due to behaviour or failure to comply with their accommodation provider’s licence agreement and expectations. With staff not trained to work with people with multiple and complex needs (MCN), behaviours that arise as a result of trauma can be seen as too challenging for the environment. As a result, clients can be evicted quickly and find themselves back at square one, in need of accommodation.

“We have experienced multiple situations where a TA resident has displayed progressive changes in their behaviour which have ultimately resulted in cancellation of their booking. Examples might include failure to maintain medication, depression or relapses into substance abuse. We are keen to find solutions to reduce the frequent cycles in TA and support progress towards stable living.”

TA Provider

As identified in FLSE’s Manifesto for Change, establishing acceptable minimum standards of training and quality for temporary accommodation providers is essential if local authorities are to use them in providing TA for people with MCN.

Over the past three years, Fulfilling Lives has facilitated training sessions for providers of temporary accommodation on how to better support people with multiple and complex needs. These sessions were led by members of the Service User Engagement team and client facing workers and gave insight into the experience of people with MCN and offered practical tools on how staff can support this group.

The sessions:

This training took place in a number of temporary accommodations across East Sussex and explored topics such as Stigma, Psychologically Informed Environments and Trauma, in the context of working with people with multiple and complex needs.

The training sessions were led by the FLSE team, and set out the following aims:

  • To introduce the learners to the concepts of – Multiple and complex needs (MCN), the impact of trauma on MCN clients, brief introduction to trauma-informed approaches (including psychologically informed environments PIE) and establishing professional boundaries with the client group. 
  • Share with learners the experiences of people with lived experience, including the impact of stigma, with a view to promoting increased empathy and understanding.  
  • The hope is that staff will feel more confident in working with people multiple and complex needs who are placed in temporary accommodation, and that these clients will have better outcomes such as increased ability to sustain a placement and better relationships with the staff. 

Feedback gathered from learners before and after the sessions highlights the positive impact training has on the understanding and confidence of staff. Learners gained knowledge around the impact of trauma and how this can present itself in the clients they work with.

“Trauma is not the event, it’s the person.”

Another learner said they would go away and particularly consider the impact of first impressions when working with MCN clients –

“The impact of first impressions on someone that is likely to be in a chaotic or stressed state. Their ability to retain information will be reduced as a result.”

A particularly valuable element of the training that was mentioned again and again in feedback was the opportunity to hear about the lived experience of temporary accommodation from the FLSE Project Consultant.

“I was really impressed with [the Project Consultant’s] story as having a real person’s account makes it more relatable”

The session received a net promoter score of 100, meaning that it was rated ‘excellent’ by attendees. Respondents valued the real-world insight gained on working with complex trauma and with multiple and complex needs.

Recommendations:

It is clear that adequate training empowers staff to best support people with multiple and complex needs and establishes a greater understanding of the impact of trauma and challenging behaviours.

In line with our commitment for change, set out in our Manifesto, and based on the positive feedback from Fulfilling Lives’ training sessions, we recommend the following:

  • The adoption of minimum standards as documented in The Emergency Accommodation Charter, which requires TA providers to train their staff with a focus on safeguarding, Multiple Complex Needs awareness and trauma informed care (TIC) and Psychologically Informed Environments (PIE) approaches.
  • For local authorities to embed Fulfilling Lives’ multiple and complex needs training videos within their online induction resources and for these videos to make up part of the mandatory training for staff in temporary accommodation.

For residents in temporary accommodation to be asked for regular feedback on their accommodation, including a section on staff conduct and adherence to trauma-informed principles.


Authors:

Eve McCallum

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  

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Developing safe accommodation options for domestic abuse survivors: a collaborative journey

How can accommodation providers strengthen their response to domestic abuse? How can we support organisations to engage with the intersectional needs of women at risk of, or experiencing, domestic abuse and multiple disadvantage? What can an effective organisation-wide response to domestic abuse look like?


Introducing DAHA

The Domestic Abuse Housing Alliance (DAHA) is a national partnership between housing associations Peabody and Gentoo and London-based charity Standing Together Against Domestic Abuse. The founding partners’ mission is to improve the housing sector’s response to domestic abuse through a domestic abuse accreditation process. The DAHA accreditation scheme is designed to help housing providers and local authority housing teams detect and respond to domestic abuse more effectively, identifying signs earlier and taking actions that improve safety and housing outcomes for survivors, including their children. DAHA accreditation acts as the UK benchmark for how housing providers should respond to domestic abuse.

Why is this work important?

We know from Fulfilling Lives South East’s (FLSE) project work that refuges are usually not equipped to accommodate women with multiple and complex needs (MCN); referrals are frequently rejected on the grounds of clients’ mental health and substance use needs being too high. As such, women experiencing domestic abuse and multiple complex needs are often housed in non-specialist settings. Their wishes are not always considered when provided with housing offers, and women can experience this as a punitive and re-victimising approach, where their autonomy, choice and opinion are overridden.

‘’Since 2019, 0 FLSE clients were recorded as having stayed in a refuge despite over 90% of female clients disclosing experiences of domestic abuse’’

FLSE data set

A shared vision

In February 2022, Fulfilling Lives South East and Standing Together will co-host a Learning Event to showcase the DAHA accreditation scheme. The event will discuss the current accreditation scheme for housing associations and local authorities as well as broader developments the Standing Together team have been working on for other areas of the housing sector. We will evidence how working towards achieving accreditation can better meet the needs of those with multiple and complex needs who experience domestic abuse. We will consider how accommodation providers can strengthen their response to domestic abuse and explore what an effective organisation-wide response to domestic abuse might look like. Sign up to the event here.

Developments in the DAHA Accreditation standards

Throughout 2020, Standing Together identified the need to develop a framework of accreditation standards specifically for homelessness and supported accommodation services to support these organisations to better identify, respond to, and support survivors who are experiencing domestic abuse as one of several complex and intersecting needs. In January 2021, FLSE members met with the team at Standing Together to discuss how developments in their accreditation scheme could better meet the needs of women with MCN using homelessness services. . Members of our project group also shared the challenges and intersectional barriers faced by these women at roundtable discussions, working together to conceptualize what appropriate accommodation and support may look like. Once the revised accreditation standards had been drafted, Fulfilling Lives reviewed the framework ahead of its pilot run, considering the potential of the standards in meeting the needs of women who experience MCN and domestic abuse if adopted by organisations.

Throughout this consultation period, FLSE continued to advocate for the reduction of stigma experienced by our client group by making multiple and complex needs visible to homelessness and supported accommodation services. As such, we welcome the standard dedicated to Multiple Disadvantage within the new draft framework, which requires staff of accredited organisations to demonstrate an understanding of how these experiences may increase the barriers and risks that survivors face, and the ability to offer additional or alternative support that is suited to their needs. The draft standards have the potential to better meet overlapping and complex needs and reflect FLSE’s two key mechanisms for achieving positive change: Service user involvement in the design, delivery and commissioning of services and the development of trauma-informed workforces. The new accreditation will require accredited supported accommodation providers to value their residents, service users and staff with lived experience of abuse as experts by experience by creating formal structures to ensure service design and delivery are co-produced. This should include at least one staff member whose role it is to organise and increase service user involvement. Organisations will also need to offer survivors choice and control over the sharing of their story, including the minimisation of survivors who experience complex needs having to repeat their experiences to multiple case workers. FLSE believes this will support organisations to develop trauma-informed and survivor-led workforces and procedures.

Make sure to join us at our Learning Event to hear more about future developments in the DAHA Accreditation standards and Fulfilling Lives’ involvement in this work.    


Authors: Emily Page

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

Emily Page, Systems Change Project Assistant:

emily.page@sefulfillinglives.org.uk

Rebecca Rieley, Systems Change Lead:

rebecca.rieley@sefulfillinglives.org.uk  

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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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