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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Driving Change from Within

How Department for Work and Pensions managers (‘DWP’) at the heart of this partnership have driven change internally.


Fulfilling Lives is a voice that represents a group of people from our communities that often struggle to overcome barriers to access support services. The local DWP teams recognised this and wanted to go on a journey with Fulfilling Lives to explore improvements to service provision and access for customers with multiple complex needs. The DWP managers understood that Job Centres do not work in isolation and are integral to local support systems and important community partners across the sector. When viewed from this stance, Job Centres need to be welcoming, inclusive and provide equity of access to the opportunities they offer.

It is for these reasons the DWP embarked on a partnership journey with Fulfilling Lives that would empower and enable the workforce to better respond to complexity and, for the Brighton Job Centre Plus (JCP), to develop greater insight into often-misunderstood members of our local community.

Active feedback gathering – the outside looking in

To understand how the Brighton JCP were perceived in the local community, senior managers invited local services to several coffee mornings to share their clients’ perceptions of accessing the Brighton JCP. From these conversations, it emerged how the building itself and front of house at the Brighton JCP was a significant barrier to engagement, causing, fear, anxiety & stress to customers, particularly those with multiple complex needs. The physical environment was described by one attendee “as speaking louder than the Job Centre staff” and this was significantly hindering a proper conversation with customers or at worst was often seen as a trigger for incidents.

Rather than looking for short-term quick fixes, the management team sat with the feedback and decided to use this as an opportunity and platform for change.

Question for DWP partners: What were your initial reactions to the feedback you received at the coffee mornings?

The initial response from the management team for Brighton Jobcentre was of great interest as the feedback was not surprising but the consistency, scope, detail, and volume gave far more weight and impetus to making specific changes than had ever been received before when trying customer surveys and other routes to identify areas to improve

Finding partners to support change

They decided to approach a local partner who knew clients with multiple complex needs well, the Fulfilling Lives team, and develop a relationship to think about how we could address these issues collaboratively for the long term.

Question for DWP partners: What did you find most helpful about the collaboration with Fulfilling Lives?

Most useful in the collaboration with Fulfilling Lives was the structure offered which became a framework that Brighton Jobcentre could use to facilitate change, the feedback from Fulfilling Lives consultants with lived experience and the fresh set of eyes from Fulfilling Lives painted a picture for Brighton Jobcentre that was incredibly illustrative.

Overcoming Barriers

We know that change is difficult. Therefore, by virtue, culture and systems change is difficult. So how did the DWP team address any barriers of challenges?

This is where the importance of developing safe spaces for staff really paid off. Spaces where new ways of thinking can be allowed to form and be challenged and, where tackling thorny conversations is indispensable. Spaces where trust and honesty can be established.

Question for DWP partners: What do you feel was the most effective way you helped overcome barriers to change?

The most important and effective way of overcoming barriers to change was to include as many Jobcentre staff as possible in the process of change and by doing this showing trust and honesty. This we feel prevented fear of change and gave confidence to exploring change.

  1. Sharing the vision: clear messages

Despite some staff understandably feeling displeased at being initially kept in the dark about mystery shoppers or assessments of the environment, and the unforeseen impact of coronavirus and the immense pressures and challenges that have come with it. The Brighton JCP team have stayed with us and continued to work as equal partners towards our common goal of improving the system for those customers with multiple complex needs.  

The team had a clear message about why the partnership with Fulfilling Lives was important and why changes were important

2. Engaging colleagues across the organisation

Two ways in which the DWP managers were able to leverage the learning from this collaboration to drive the change internally was through employee participation and effective communication.

Firstly, Brighton JCP staff had the opportunity to be involved in decision making through two working groups that were established to implement Fulfilling Lives recommendations. Additionally, when feeding back on the outcome of the mystery shopper and environment assessment the feedback was presented by Fulfilling Lives to the entire Brighton JCP staff team. Including the G4S security guard team. This approach set the tone that as a service we were all it in it together and we weren’t going to shy away from the tough questions we need to ask ourselves.

Secondly, this approach to openness and effective communication was extended to senior leaders.  The learning and momentum developed with the wider workforce established the platform to communicate in a way to DWP senior leaders that painted a clear picture of what was possible in supporting this group of customers going forward.

3. Supporting staff: training and development

By embedding a mandatory training resource in the induction process for new employees the DWP workforce will have better insight into trauma informed practice and complex needs. Leading to more confident, knowledgeable, appropriate, and empathetic responses towards customers presenting with complex trauma histories. 

4. Sharing the change with others

Creating a workforce development resource that is embedded into the DWP Sussex & Surrey district learning and development platform, presented a unique opportunity to share the learning beyond the Brighton JCP and aid the DWP to continue the drive for change from within.

We shouldn’t lose sight of the degree of effort culture and systems change requires generating the traction to make it happen. It needs people who can adjust to their audience and adapt the messaging to differing levels of an organisation and in doing so create momentum to bring people with them, and ensuring senior leaders understand the value of the proposition.

Question for DWP partners: Looking back on the change journey and partnership, is there anything you would do differently?

Although the change journey could not be fully envisaged at the outset, it would have been beneficial to link up with national DWP colleagues at an earlier stage. This would have started conversations about national roll out of training resources earlier as we have since found that navigating the national framework of training and development a complex task because of the differing agendas in different areas of the DWP.

Question for DWP partners: What might you say to other leaders looking to embark on large scale change?

We would say with a very high level of conviction “seize the opportunity and you have nothing to lose and everything to gain”. Also, we would say it is so important and powerful to begin to better understand how our services can be prohibitive and the benefits of removing barriers for people with multiple complex needs.

.


Author: Alan Wallace

Should you wish to find out more about our partnership work or our systems change efforts, please contact:

Alan Wallace, Systems Change Officer: alan.wallace@sefulfillinglives.org.uk

Or

Rebecca Rieley, Systems Change Lead: rebecca.rieley@sefulfillinglives.org.uk

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Review on Drugs – will change happen for people with Multiple Complex Needs?

In August 2020, Fulfilling Lives South East (FLSE) responded to a call for evidence to support Dame Carol Black’s Part 2 report that focuses on the treatment, recovery and prevention of substance misuse. FLSE’s Service User Involvement team also contributed directly to Dame Carol’s consultation through the National Expert Citizens Group. The report, which contains 32 recommendations for change across various government departments and other organisations, was published in July 2021 and the Fulfilling Lives’ team now reflects on how far the measures go in meeting the needs of those with multiple complex needs.


Time to reflect and review

The Review is momentous on several counts and relevant to the work FLSE undertakes. When reflecting on the recommendations we made in 2020, altogether, we found 14 recommendations out of the total 32 that speak to our asks related to multi-agency working and integrated services; trained workforces providing trauma-informed support; the criminal justice system/repeat offending; housing and employment support; treatment and access needs for co-existing conditions; healthcare inequalities; assertive outreach; peer mentoring and recovery communities. The Review contains findings that are compelling and serve as a reminder that organisations working to improve systems for people with multiple complex needs are not lone voices.

For example, our research found that substance misuse problems always exist in a wider context so it can’t be addressed in isolation. Overlapping complex issues need to be considered when providing support in a trauma-informed manner because addiction is often a response to deep trauma. We were pleased to see that the Review acknowledges that mental health problems and trauma (physical, sexual and psychological) often lies at the heart of drug and alcohol dependence and views them as “co-morbidities rather than separate problems for ‘dual diagnosis’”.

An overwhelming majority of our research respondents strongly felt that peer support and mentoring had been essential to their recovery and peer mentors should be assigned to those finding it difficult to engage with services. In response, the Review recommends that services recruit or include people with lived experience of drug dependence working as recovery champions, recovery coaches and peer mentors, which speaks to our work with the DWP. It further states that they should also provide networks of peer-based recovery support and establish communities of recovery and mutual aid groups. We’re thankful that the Review also calls for increased funding to aid the expansion of local areas’ support for peer-led grass-roots recovery communities and peer mentoring in order to complement professionally led services.

Our Concerns

Whilst we welcome the Review’s recommendations on peer-based recovery support, we are disappointed in the lack of advocacy for more specific women-only recovery and refuge spaces in early recovery and intervention. Our Lived Experience Perspectives Report, which was drawn from a series of conversations with women that have experienced drug and alcohol misuse, highlights the need for women to feel safe while sharing a number of gender-specific intersecting needs and issues including (but not limited to) the experience of coercive and abusive relationships, removal of children by social services and sexual exploitation. Many women we spoke to felt that mixed settings in hostels and temporary accommodation pose a risk to women who may have experienced complex trauma and valued ongoing participation in women’s groups:

“We share and see emotions in a different way to men, so it is essential to be in a safe space where women have similar ways to understand and to communicate emotions.”

Fulfilling Lives South East submission on ‘Lived Experience Perspectives’ for the Independent Review of Drugs by Professor Dame Carol Black

Despite the acknowledgement of overlapping and complex issues, we still feel there needs to be an explicit definition of multiple and complex needs within Dame Carol Black’s part 2 report. We believe that the complexities of overlapping and multiple disadvantage should be named and adequately defined in order to provide more targeted support that is free from judgement, stigmatization or unfair treatment and exclusion.

How will these measures impact those experiencing drug/alcohol misuse and complex needs?

The recommendations – if enacted – have the potential to radically change the way someone with multiple complex needs experiences the support system while on their path to recovery. Agencies working together would reduce the likelihood of service users being left out in the cold or reaching an impasse where no service assumes responsibility. The suggestion of consideration (unfortunately not a requirement) that the NHS target those with substance dependencies, and that commissioned substance misuse services incorporate select mental health treatment, would finally allow those suffering mental ill-health and substance dependency to engage in treatment that is designed to target both at the same time, rather than neither, as is the case for many. This is the official stamp for what many in the sector have been championing for a long time.

Increasing the number of well-trained mental health professionals is a necessary complement to combined mental health and substance misuse treatment, and a trauma-educated workforce would help to build trust with those they support, the importance of which should not be understated. With many mental health professionals and psychotherapists holding the view that early relationships are a significant contributor to mental health problems and addiction, it follows that they are also an important part of someone’s recovery.

The review recognises that the criminal justice system isn’t the most appropriate place for someone with substance dependency, and rightfully suggests that treatment is the most suitable outcome. It goes on to recommend that upon release, everyone has identification and a bank account, with access to benefits services and community drug treatment as soon as possible after release from prison.  If these recommendations are enacted, those already stigmatised could avoid further stigmatisation and damage to their sense of self, the additional barriers that result from incarceration, and the effects of being institutionalised by the prison system.

Although the review didn’t go on to recommend any direct action to improve housing for those with substance dependency, it was a step in the right direction to suggest the relevant government departments work together to gain a better understanding of the needs of this cohort. Similarly, regarding health inequalities, there was no proposed solution, more of a stern word to the government to get a plan together by the end of 2021 to integrate specific health service provisions for this group into the local integrated care system.

Final reflections

The recommendations vary in their assertions and don’t always provide direct solutions. Regardless, the Dame Carol Black review has laid bare the barriers faced by people with multiple complex needs who suffer from addiction. The proposals are a clear message to the government to take responsibility for the systemic shortcomings that, at best, hinder recovery and at worst, add to the physical and psychological decline of the most vulnerable in society. The announcement of a 10-year drug strategy provides the government with the opportunity to implement the recommendations put forth in this report, ensuring that the road to stability for people experiencing addiction and associated problems would be smoother and easier to navigate than ever before.

“The government’s 10-year strategy looks great on the surface, with commitment to delivering on all recommendations laid out in Part 2 of the report being a highlight. There is some cause for concern though. It doesn’t reflect the lack of control faced by people with substance addiction, as judges will still be able to issue custodial sentences for non-compliance of community sentences. The ‘tougher consequences’ line is also baffling. Tough consequences don’t deter people from using drugs and the idea of taking away someone’s passport/driving license is bizarre. They haven’t alluded to what other ‘tough consequences’ are being considered, so that is a bit of a worry. It also would have been nice for the government to legitimise the role of peer supporters by referring to the post as a paid role’’

– Engagement and Co-Production Worker

Authors: Ian Harrison, Emily Page, Aditi Bhonagiri

Resources:

Lived Experience Perspectives Report: Fulfilling-Lives-Lived-experience-Dame-Carol-Black-Independent-Review-of-Drugs.pdf (bht.org.uk)

Dame Carol Black’s Part 2 report that focuses on the treatment, recovery and prevention on substance misuse: Review of drugs: phase two report – GOV.UK (www.gov.uk)

For further information about Fulfilling Lives work in this area, please contact Rebecca, Systems Change Lead: rebecca.rieley@sefulfillinglives.org.uk

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Interrupting cycles of reoffending – through trusted partnerships

How can we effectively interrupt cycles of repeat offending and in doing so create spaces where appropriate interventions can be co-ordinated by the Probation Service and other partners including the Voluntary and Community Sector?


Working with Probation

People who repeatedly cycle through the criminal justice system (CJS) are often identifiable as having multiple complex needs. Many have repeated contact with the police, courts, prison, and the Probation Service.  This can present acute challenges for people who may be homeless, use substances and experience poor mental health, as, due to the instability in their lives and the stigma they often face in services, they find it difficult to get the support they need.

By working closely with Probation colleagues throughout the lifetime of the project, Fulfilling Lives workers were able to evidence three key areas where creative and flexible partnership working helped to facilitate smoother transitions and longer intervals of consistent support in the community for clients. The areas focussed on in the Creative Practice report were:

1) flexible approaches around breaches allowing access to healthcare and housing interventions,

2) co-ordinated pre-release planning through prison in-reach and meeting clients at the gate, and

3) trauma and psychologically informed approaches to working.

Trusting Relationships are Key

Developing creative and flexible approaches to supporting clients with multiple complex needs requires professionals to establish relationships built on trust. Trust in others’ knowledge and expertise, and trust in others’ professional judgement. It is when we have created these trusting relationships that we can start to bring more creative thinking on how best we can work together to provide support to clients with multiple complex needs to ensure the client has the best opportunity for a positive outcome.  This flexibility around breach for Fulfilling Lives clients was predicated on Probation Officers and Fulfilling Lives frontline workers having professional relationships based on trust in one another’s area of expertise.

To Breach or not to Breach (that is the question?)

This can be a difficult decision for Probation Officers to make. In our report, we identified several examples where Probation Officers took thoughtful and considered approaches when working with Fulfilling Lives clients, striking a balance between providing support, as well as ensuring compliance with the relevant licence conditions/order requirements. The use of professional judgement from Probation Officers to not breach some individuals and take a more person-centred approach has had positive outcomes. Allowing clients’ relationships with community support services to remain more stable, bringing continuity of support and space to follow through on planned or preventative interventions to reduce reoffending and break the cyclical nature of imprisonment.

When Trusting Relationships Lead to Good Modelling

Fulfilling Lives and Probation jointly supporting clients within a framework of trauma informed practice has enabled both services to reflect similar therapeutic approaches when considering compliance to licence conditions. Fulfilling Lives workers were able to focus on building trusting relationships with clients who have experienced complex trauma and who are typically regarded as hard to reach or who are experiencing multiple and long-term barriers to treatment and appropriate support, leading to improved engagement and outcomes. It has been encouraging to see that this level of insight has also been demonstrated by some Probation colleagues enabling creative, trauma informed work to take place. Again, we can see that this flexible approach to compliance comes from a place of professional relationships based on mutual trust. Probation being able to trust Fulfilling Lives workers to fulfil aspects of the licence requirements requires a level of trust in each other’s expertise and judgement, ultimately resulting in a more positive outcome for the client.

Fulfilling Lives South East View

As workers supporting clients in the CJS we need to be continually asking ourselves how we can work in a more flexible way to achieve better outcomes for clients with multiple complex needs.

Trust between professionals to take positive risks is an important aspect of flexible working to achieve better outcomes for the client. When you trust professional colleagues, you have confidence in their integrity and their abilities, and their agenda and capabilities. Ultimately trust creates spaces where ideas can be shared and developed and resistance to change can be overcome. This has applied to both the approach taken by Fulfilling Lives as well as that of Probation. The kind of trust that was established between Fulfilling Lives and Probation Officers took time and effort to develop.

The challenge will be how can we create opportunities for greater partnership working, exposure to specialist training, creative interventions and reflective spaces within already stretched teams that are supporting increasing numbers of clients with complex needs.

The solution must be to take a broader, system-wide perspective and draw on resources outside as well as inside Probation services. By strengthening partnership working, we can hope to build greater capacity in the system to support individuals more effectively and ultimately enable more individuals to move away from cycles of reoffending.


Authors: Alan Wallace, Sandra Sylvester

Should you wish to find out more about our partnership work or our systems change efforts, please contact:

Alan Wallace, Systems Change Officer: alan.wallace@sefulfillinglives.org.uk

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Working with the DWP (not against them)

Using co-production as the foundation to drive positive change for people with multiple complex needs.


Co-Production and driving change

Brighton Jobcentre Plus (JCP) is not known for its inviting exterior or the promise of fond memories for those who cross its threshold. Its brutalist form sits stoic and unforgiving next to the Law courts and a stone’s throw from Brighton Police Station. The three front-mounted security cameras cast a suspicious eye over all who enter. Over the past 7 years, working with people with lived experience has taught us that approaching the Brighton Jobcentre can leave people feeling, nervous, fearful, judged, and powerless. For locals, Brighton Jobcentre has not – historically – conjured images of warmth, compassion, or community.  Well, that’s changing.  Right now.  Not the exterior though, sorry!

The Fulfilling Lives South East (FLSE) partnership with the Brighton Jobcentre began in the summer of 2019.  From the beginning, Fulfilling Lives (FL) project staff and volunteers worked together with Brighton JCP management to design a Mystery Shopper exercise to evaluate how the Brighton JCP staff engaged with customers presenting with multiple complex needs. As well as this we assessed the building environment with the aim of understanding how at times the Brighton JCP could have a confusing and negative impact on some of the service’s most vulnerable customers.

To assess the service at its most authentic, Fulfilling Lives and Brighton JCP management decided it would be best to conduct the Environment Assessment and Mystery Shopper evaluation covertly. Without informing the staff. Yep, that happened.  This decision – made at the start of our partnership – shows the humility of our local DWP partners and their willingness to address any power imbalance; it was a risk to assess their own service without informing their workers, it was a risk to partner up with a small project to help them do so.  Lived experience volunteers and FL staff took part in planning the mystery shops, writing character biographies, and acting out the roles. The environment was assessed for its ‘Psychologically Informed’ design, which includes highlighting potential triggers that might hyper-arouse visitors with complex trauma histories, as well as areas of comfort. The FL project team presented the findings and recommendations from both the Environment Assessment and Mystery Shops to the whole Brighton JCP staff team.

Despite some staff understandably feeling displeased at being kept in the dark and the unforeseen impact of coronavirus and the immense pressures and challenges that have come with it, the Brighton JCP team have stayed with us and continued to work as equal partners towards our common goal of improving the system for those customers with multiple complex needs.   

Following the evaluations, working groups were setup with JCP and FL staff and volunteers to discuss the mystery shopper and environment assessment recommendations and how they could be translated to real change.  Due to having practically zero budget to work with, there was discussion of JCP staff donating their own personal items, such as cushions, to make the environment more welcoming. This commitment on such a personal level is worlds away from the impression many have of the Jobcentre as a cold institution. Art from the local Brighton & Hove Recovery College was hung on the walls, security guards were repositioned to appear less intimidating, toilet access was made easier, a reception desk was added, staff were given relevant additional training, private safe rooms were made available, and more. Fulfilling Lives went on to deliver workshops and webinars to over 350 JCP staff. And produce an eight video training series with lived experience volunteers to support the JCP staff to work more effectively with customers living with multiple complex needs. 

Instead of two organisations trying to further their own agendas, we wanted to embark on this relationship in the spirit of co-production; a single team made up of individuals with varied skills and experiences setting out to achieve a common goal.  As organisations, we are both working to make life easier for people who are struggling.  By working together instead of digging our heels in and fighting our respective corners, we have built a relationship of trust and reciprocity, where we understand each other’s roles, responsibilities, capacities, and capabilities.  With this attitude, the third-sector, local government, and people with lived experience have come together to create positive, social change, the influence of which has the potential to spread far and wide.

Coming up

In the next instalment of this blog series, we will hear more from the DWP managers at the heart of this partnership on how they leveraged the learning from this collaboration to drive the change internally.


Author: Alan Wallace, Ian Harrison

Should you wish to find out more about our partnership work or our systems change efforts, please contact:

Alan Wallace, Systems Change Officer: alan.wallace@sefulfillinglives.org.uk

Or

Rebecca Rieley, Systems Change Lead: rebecca.rieley@sefulfillinglives.org.uk

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Making Systems Change Stick   

What are the ingredients that can generate the momentum to make systems change possible?


First Steps

What made the local Department for Work and Pensions (DWP) managers agents of change? Are the DWP managers that Fulfilling Lives South East work with systems superheroes? The answer, unfortunately, is ‘no’ they are not. Sorry! But they are the type of people that are in short supply.

As systems changers there are signs, we should be on the lookout for so we can recognise when we’ve landed upon the ingredients required for successful and positive systems change. We need people who are willing to take a risk, people who can sit comfortably with having critical friends, where objective reflection of practice is understood as vital to the process. We wouldn’t call it a leap of faith, but we do need people who are open to the concept of change; people who understand the value that lays in the journey as well as the outcome.

Until people like this encounter an opportunity to exercise this instinctive attitude to give it a go, organisations all too often are on a set course. These are the people who act like hinges shining light into dark corners and forgotten corridors, enabling organisations to pivot and develop new paths and ways of looking at service provision.  

When we do find these people (they’re out there!), it leads to the types of relationships that encourage and motivate others to jump aboard. And ultimately, ushers in positive change of the nature achieved through the Fulfilling Lives South East and the DWP partnership.

The first stages of working with the DWP

Once we have realised that we have identified the necessary ingredients, how do we as systems changers seize the moment and start to cultivate the ground?

Creating Partnerships

Fulfilling Lives’ job is to help key stakeholders and potential new partners engage with service and systems challenges that have an adverse impact on clients with multiple complex needs accessing or participating with their service. In doing so, we can create a space where honesty and trust can be established. Working collaboratively in this way can shape a new vison of what the future could look like.

Simply put, we want to define the problem together and from this set out ways to solve challenges. In the case of the FLSE and DWP partnership we wanted to answer two questions:

  • How do we successfully and meaningfully promote and embed Trauma Informed Practice and, for the organisation to understand more coherently the support needs of customers with a range of complex health and social issues?
  • How do we provide staff teams with the right support, tools and, education to build confidence and resilience to safeguard staff wellbeing?   

Now that we’ve created a space where traditional thinking can be re-evaluated, it’s important that conversation does not get stuck discussing and thinking about theoretical frameworks of systems change. A fundamental component of Fulfilling Lives’ approach to supporting partners to understand the challenges faced by people with multiple complex needs, is through working within a co-production model and supporting Fulfilling Lives’ lived experience volunteers and staff to be involved at the heart of the systems change work we embark on.

The FLSE co-production model afforded the DWP a level of access to customers with multiple complex needs that they had not experienced before. It’s this approach that can profoundly alter perceptions, rooting the need for and direction of change in humanity and care. Feedback, at times critical feedback, can be difficult to handle. But with the right ingredients, in spaces where honesty and trust are reciprocal, and shared vision making is valued, the most candid of feedback is used as the next steppingstone to understand the problem more clearly and how to address it.

Changing Culture and Outlooks

In collaborating with DWP managers to understand the challenges through the eyes of customers with multiple complex needs, Fulfilling Lives provided a foundation for DWP managers to open up internal conversations on the most difficult aim of systems change, but likely the most influential and compelling: culture change. Alongside Fulfilling Lives, the DWP managers effectively communicated to the wider workforce how the organisation should be thinking about and supporting customers with multiple complex needs. This created momentum and professional curiosity that was evident through the positive engagement from the over 350 DWP workers that Fulfilling Lives facilitated online workshops and webinars for.

This learning and momentum created the platform to communicate in a way to DWP senior leaders that painted a clear picture of what was possible in supporting this group of customers.

Changes

The partnership and its foundations have enabled important activities that have supported a journey of change that is still evolving and developing as contexts change. We have compiled the key activities to illustrate the possibilities of close partnership working and to set out how we have approached putting systems change into practice together. This partnership journey can be viewed in detail here: Partnership Timeline.

Coming Up

In the next two instalments of this blog series, we will hear more from both the FLSE’s Service User Engagement Team on how they leveraged co-production practices to support systems change, as well as from the DWP managers at the heart of this partnership on how they leveraged the learning from this collaboration to drive the change internally.


Author: Alan Wallace

Should you wish to find out more about our partnership work or our systems change efforts, please contact:

Alan Wallace, Systems Change Officer: alan.wallace@sefulfillinglives.org.uk

Or

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