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.

• ARCH Healthcare (Brighton)– a specialised GP practice for people experiencing homelessness in Brighton & Hove        
• St John Ambulance Homeless service (Hastings)– a volunteer-led, first-aid charity which now provides mobile primary healthcare as well as static drop-in clinics. 
• The Rough Sleeper Initiative East Sussex (Eastbourne, Lewes, Hastings, Rother & Wealden)– a multi-disciplinary team providing intensive assessment and support work for verified rough sleepers (through local authority checks) to help with access to accommodation. Ongoing wrap-around support is provided by the multi-disciplinary team and dedicated Housing First support workers.  
• Seaview (St. Leonards-on-Sea)– a day service providing support for marginalised people with addiction problems, mental health issues, ex- and at-risk offenders, and rough sleepers.  

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  

For more information sign up to our newsletter:

https://bht.us6.list-manage.com/subscribe?u=b43e61c311da27ad5194daffe&id=148d2193de

In our blog post of 13^th 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

Sign up to our newsletter:

https://bht.us6.list-manage.com/subscribe?u=b43e61c311da27ad5194daffe&id=148d2193de

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

Sign up to our newsletter:

https://bht.us6.list-manage.com/subscribe?u=b43e61c311da27ad5194daffe&id=148d2193de

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

For more information sign up to our newsletter:

https://bht.us6.list-manage.com/subscribe?u=b43e61c311da27ad5194daffe&id=148d2193de