In our Manifesto for Change, Fulfilling Lives South East (FLSE) identified that women experiencing multiple disadvantage going through child protection and care proceedings should be offered independent advocacy, with the aim of helping women understand each stage of the process, including what is going to happen next.
Our internal Project Group identified a lack of resources available to explain the process of what happens when Children and Family Services get involved.
In January 2021, FLSE created a sub-group which included volunteers, experts by experience as well as other team members to help prioritise the different discussions and we created a mind-map together, shown below.
As a team, and together with SpeakOut, we wanted to ensure that the information is accessible and available. Over the years, clients, front- line staff and experts by experience voiced the need for a leaflet and a simple explanation of the process of what could happen at different stages when social services are involved in childcare proceedings. Together with the sub-group we reflected on this and identified the lack of coordinated information and support. This really did highlight to us the importance of creating new resources to support women with MCN going through care proceedings. That is why FLSE has worked together across teams, with co-production at its heart, to develop and share our Guide to Child Protection and Care Proceedings as well as the new Women’s Rights leaflet.
We are also lucky to have dedicated volunteers and a passionate action group. Their input was crucial on how the resources have been created and designed.
Reflections from Linda, a volunteer with FLSE:
‘The creation of these resources was the first project I helped to co-produce as a volunteer for FLSE from start to finish.
Co-production requires everyone’s involvement, ideas and feedback. Getting feedback on a piece of work that someone has done can be scary or upsetting and was something I was worried about. However, one of the highlights of the project for me turned out to be getting feedback from other volunteers, having them input ideas on how to make the design as accessible and useful as possible, as well as the thoughtful opinions and information provided by the frontline staff team.
I had the opportunity to experience the highs and lows of “getting things done” in a safe, pressure-free environment. It has given me an idea on how services operate (or should operate?) and helped me realise how teamwork is necessary to break down daunting tasks into more manageable steps, thus expanding what can be achieved by people in order to change, and helping people navigate various systems.‘
Reflections from Vikki, FLSE Engagement Worker:
‘It has been a privilege to work alongside Michaela and Linda creating this important set of resources. This work is a great example of co-production in action and the positive impact it can have – both on the work produced and the individuals taking part.Linda is a very motivated and reflective volunteer with many skills, and it was great to be working in a project where we place trust in volunteers to take ownership of pieces of work of their choosing and allow them space to shine. She was also able to identify development goals that she would like support to achieve during this process, such as presenting the work to groups of people and incorporating their feedback into the final product.
By consulting with frontline staff, systems change staff, managers and a diverse lived experience group we have ensured our final resources approach this sensitive and potentially triggering topic sensitively and that they will be useful to a wide range of people. Building relationships of trust across teams of staff and volunteers, and holding our meetings in a safe, boundaried, trauma-informed way meant that people felt comfortable using their voice and sharing their opinions.
This project is also an example of a volunteer having value beyond their lived experience – Linda used her lived experience perspective in creating the resources but also drew on other personal and professional qualities to take part in these pieces of work.‘
Producing such sensitive resources involved lots of conversations with FLSE’s project group, partners like SpeakOut as well as front-line staff and social workers.
For us it was crucial to use the full ladder of co-production to make sure we are inclusive, support people to voice their opinions, give them choices for how they take part, and offer chances to give feedback and build that feedback into the work. To ensure accountability, our experts by experience actively fed into the design and content of the video, as well as deciding the content and colours of the leaflet. We are very happy that Linda took the leading role in designing the leaflet.
There is still a lot more work to be done to ensure women experiencing MCN and recurrent child care proceedings are being fully supported across systems and we continue taking steps to minimise this gap.
Vikki Hensley- Project Consultant Linda Paoli- FL Volunteer Kate Jones- Project Consultant Michaela Rossmann- Systems Change Officer
Looking at out of area accommodation placements and the impact on people with multiple complex needs
In the last seven years, Fulfilling Lives has supported people with multiple and complex needs (MCN) to get access to suitable housing. The particularly acute housing shortage in the South East means that higher numbers of people with multiple and complex needs are being placed in unsupported temporary accommodation, including out of area placements, and are remaining in this accommodation for longer.
This crisis of supply has led to local authorities placing some people who require housing out of area. Fulfilling Lives client data shows that out of area placements were offered by a local authority to our client group 20% of the time. This presents people with multiple and complex needs with impossible decisions around choosing between receiving the support they need or accepting accommodation out of area. As a result, only 10% of out of area placement offers made to our clients were taken up.
Relocating away from their local area creates a range of issues for people experiencing multiple and complex needs, such as –
Being unable to benefit from outreach services
Support workers are unable to effectively monitor well-being
The area is unfamiliar, so it is difficult to find services and facilities
Financial problems e.g. travel costs and council tax
Living away from social and personal support networks
In 2015, a Supreme Court ruling brought greater attention to the issue of out of area placements. Titina Nzolameso, a single mother of five children, was evicted from her home in Westminster and after making an application for housing support, was offered a house in Bletchley, Milton Keynes (approximately 50 miles away). Ms Nzolameso turned this offer down on the basis that she had already been a resident of Westminster, had on-going health concerns and did not want her children to have to change schools. Nzolameso decided to take her case to the Supreme Court, and the Court ruled in her favour. The case has impacted housing practice across the country and many local authorities subsequently reviewed and updated their allocations policies following the ruling.
A report completed by Fulfilling Lives and the University of Brighton reviews the policies relating to out of area accommodation placements of Brighton and Hove, Eastbourne and Hastings local authorities and sets out recommendations for how these policies can better support people with multiple and complex needs.
All local authorities should publish their Temporary Accommodation Allocation policies publicly online. This provides greater transparency and clarity in order to avoid misinterpretation in practice and to ensure that clients and their support networks are aware of the allocations criteria.
Out of area placements are rarely suitable for people with multiple and complex needs and local authorities should make every effort to house this group in their local area.
The Nzolameso case should be revisited by local authorities and the learnings reviewed to ensure compliance with best practice in all areas.
If people with multiple and complex needs are offered a placement out of area and they refuse it, they should not then be considered ‘intentionally homeless’ and the local authority should continue to carry out its duty to house the person.
Should an out of area placement be unavoidable, the local authorities should maintain regular contact with the host local authority to ensure that there is continuity of care and intensive support available to people with MCN.
There should be cross county discussions between local authorities around supporting each other with out of area placements. There are similar challenges named by each local authority and we feel dialogue between local authorities and the production of joint working protocols would be useful steps.
Reflections on the experiences of patients with complex needs and thoughts on how discharge approaches can be developed
At Fulfilling Lives South East, we’ve seen how hospital discharges can be a challenging time for patients with multiple and complex needs (‘MCN’). Our client casework has shown us how clients are often discharged to unsuitable accommodation, or to the street in the very worst of cases. The NHS is a complex system, and in the area of discharge this complexity is compounded by the fact that there is a shared responsibility with Adult Social Care for discharge planning in complex cases.
Hospital discharge – Case example:
S is a female homeless client who had been in hospital for five weeks. She was diagnosed as suffering from endocarditis, with damage to the mitral valve, two thalamic infarcts and two cysts on the brain. At the beginning of week six, despite her being homeless, it was recommended that she be discharged and that she “go home and gain further weight and return after a month to review her health ahead of a referral for heart surgery”.
In April 2021, FLSE and the Brighton Healthwatch Hospital Discharge Project invited organisations from the Voluntary and Community Sector as well as the NHS to discuss how hospital discharge for people experiencing MCN can be improved. The overarching themes identified were that community mental health support services are stretched and can be difficult for patients to access after hospital discharges but also that hospital discharge means different things to different organisations. We understand that the health, social and third sector are funded and set up quite differently and this runs the risk of services being fragmented which in turn contributes to the difficulties when supporting patients and clients. These difficulties include challenges around information sharing and communication between services and lack of knowledge on where to find the right support depending on referral criteria and thresholds.
At Fulfilling Lives, we have dug deeper into the processes and procedures of hospital discharge and challenged ourselves to articulate what a better hospital discharge system could look like. This involved a focus group of specialist workers who support people with multiple and complex needs, systems change staff and those with lived experiences of hospital inpatient and discharge procedures. Our key thoughts are outlined below.
Underpinning Principles – We feel that all processes should be informed by the following principles
Support starts early when planning for hospital discharge with the first paramedic / GP / professional contact. These people help inform the patient’s needs and contexts that should be considered in discharge plans.
Treatment will be delivered in a Psychologically Informed Environment (‘PIE’) which respects privacy (i.e. no interviews in glass interview rooms) and client ‘agency’ i.e. respects the fact that the client is in the room and isn’t ‘spoken about’ as though they are not.
Being human We want the best medical outcomes for clients and understand that this is best supported by recognising the humanity of the client and taking a trauma informed approach to their care and recovery.
Ensure that the client’s voice is heard early in the process and consistently throughout.
Hospital discharges for people with multiple complex needs will have clear accountability and oversight within the healthcare system.
Discharge planning takes patient’s outside circumstances into account and reflects their impact on health – this will require consistent consideration for health determinants not just the presenting clinical healthcare needs.
Recognition that in-patient treatment, including the impact of medication, can impact on a patient’s ability to make decisions.
Underpinning Behaviours – we believe that certain professionals’ behaviours enable successful hospital discharges.
Demonstrating kindness and flexibility is key to providing reassurance to people with MCN who have had multiple negative experiences of support services.
Creating opportunities for friendly conversation is important to minimize the perception of care being perceived as ‘business like’ or the patient feeling unwanted in the hospital and helps to build trust. The client will be alert to any signs that they are being judged in a negative way and will be at high risk of self-discharging.
Be mindful of one’s own stigmatising views and unconscious bias. Be aware that factors such as workplace stress and our own health and wellbeing will have an impact on our work. Take active steps to maintain your equilibrium and expect the workplace to support your performance through supervision, reflective practice and other means.
Tools – enabling factors that will support positive hospital discharges
The hospital will keep details of the client’s support network. This will include details of community-based professionals trusted by the patient to help them communicate with the hospital and likely provide care post-discharge.
Published policy regarding MCN patients including standards relating to discharge planning.
Explicit monitoring, and management of hospital discharges for patients with MCN.
Training in trauma informed care for staff at all levels of the hospital to support effective engagement, communication and support for patients with MCN.
Mechanisms for feedback that enable feedback from the voices people with lived experiences to be easily captured and learnt from with minimum bureaucracy.
A strategy to tackle ‘self discharges’ and unplanned exits from hospitals.
Ideas for hospital discharge protocols – tangible practices that we feel can inform hospital discharge protocols for patients with MCN
Patients with Multiple and Complex Needs (MCN) should have a risk assessment and support plan to improve the prospects of the patient engaging with the full course of treatment and reduce risks of unscheduled discharge.
The client’s admission paperwork will include the contact details of support staff who can help the patient communicate with the hospital and articulate their views. For patients with MCN, this may include social workers, mental health nurses, GPs, probation workers and members of the voluntary sector. The ward staff are encouraged to help the patient liaise with that support network to ensure that they are included in the whole process.
The admission will take an overview of their housing situation, pets, family and medication. The client may need help to pack a bag or provide themselves with the things they need for a stay in hospital.
In an unplanned admission the multiple and complex needs of the patient will be recorded by the Accident and Emergency team (or earlier where the patient has received an initial assessment by a paramedic) and communicated to ward staff when that patient is admitted to a ward.
At admission, or preferably before, there will be an assessment of the patient’s safety and needs. This assessment will include drug and alcohol use, issues concerning visitors and issues of domestic abuse.
We would also recommend informing the patient’s GP of the hospital admission.
As mentioned in the Mental Health Act Review 2021 (Chapter 4), we support the idea of strengthening the patient’s right to refuse and choose treatment.
We would like patients to have:
greater influence over decisions about their care and treatment,
their wishes and preferences respected and followed
the opportunity to challenge their care and treatment if their wishes are not followed.
FLSE would like to see an ‘advanced choice document’ across all healthcare sectors, physical and mental. With a system in place that communicates between services, information sharing is increased which in turn helps patients to feel more confident and less stigmatised.
We would strongly encourage for the healthcare system to introduce this trauma informed approach.
To read more about how we contributed to the Mental Health Act Review please see our blog post here.
We would strongly suggest that prior to discharge of a person experiencing MCN, Adult Social Care is required to assess the patient’s needs. This would include closer collaboration between discharge coordinators, social workers in hospital and Adult Social Care.
Ideally, a multi-agency health and complex needs forum is created to discuss more vulnerable patients. This is to make sure that a support system is in place prior to discharge. This includes informing GPs and other non medical support networks of the discharge and we are aware that in Brighton & Hove there is such a forum to discuss patients with complex needs to support their care in the community – this is an approach we support.
In our experience, patients with MCN being discharged on a Friday is difficult. This is because there is sometimes not enough time to organize and set up support for the weekend and the accommodation they may need, especially when at risk of homelessness.
The patient’s GP would be notified of the discharge and given the community care/discharge plan.
There will be a specific record kept of the steps taken to include the patients voice including specific details of what they have done differently to capture innovation.
Patients with MCN will be recognized throughout the patient record data systems and accountability will sit with an accountable person within the hospital staff team for hospital admission and discharge of those patients with MCN.
There will be a loop for patients to be able to provide feedback and suggestions to improve interactions.
Hopes for the future hospital discharge system
During the Connectivity Meeting, it was clear that communication between different services (NHS, social care and the Voluntary and Community Sector) is difficult.
We discovered that hospital-based social workers don’t automatically collaborate with community based social workers and information isn’t being shared with other non-medical support networks. We also learnt that the Voluntary and Community Sector services, as well as mental health services, have long waiting lists and that their services are stretched.
The group has also identified that the different systems feel silo-ed and there are few opportunities for collaboration and smooth discharge transitions into the community.
The below was an attempt to map the different services involved in hospital discharge and how these relate to each other. It prompted us to reflect on the commissioning of services to support hospital discharges and how there is an opportunity for commissioners to improve linkages between services and help the support system organise in more joined up and efficient way.
However, the group also suggested that it would be useful to improve communication between hospital, social care and community teams by introducing joined access meetings. These meetings would focus on all aspects (medical and non-medical) of the patient’s support system and that the patient would be able to join this meeting.
Our conclusion is that the hospitals need to review their discharge protocols and develop revised ways to support patients with MCN through the system. This needs to include mechanisms for joint planning with the patient and their closest support networks.
In 2020, the Service User Involvement team at Fulfilling Lives South East fed into the public consultations towards the Independent Review of Drugs by Dame Carol Black, commissioned by the Home Secretary. This blogpost outlines the process of gathering the unique lived experience perspectives of women who had used the substance misuse services as well as creative recovery groups. The findings from our submission have now been published into a report which provides the local context of accessing drug treatment and recovery in East Sussex.
In February 2019, the Home Secretary appointed Professor Dame Carol Black to undertake an independent review of drugs to inform the government’s thinking on what more can be done to tackle the harm that drugs cause. The study took place in two phases; the first phase was published in February 2020 and included a rigorous and ground-breaking analysis to understand the complex and overlapping markets for illegal drugs, which can be read here: https://www.gov.uk/government/publications/review-of-drugsphase-one-report/review-of-drugs-summary.
In July 2020, public consultations began for the second part of the review and focussed on understanding the challenges involved in drug treatment, prevention and recovery and opportunities for improvement. Fulfilling Lives South East Partnership (FLSE) fed into the public consultations though the National Expert Citizens Group (NECG), who were approached to gather the views of people with experience of substance misuse as well as other intersecting complex needs such as mental ill health, homelessness, domestic abuse, and removal of children.
The NECG is a partnership of people connected to all of the 12 Fulfilling Lives projects across the country, who also have direct experience of multiple disadvantages. Their aim is to raise the bar on co-production and to demonstrate how lived experience leadership and insight can change systems and services.
As part of our contributions, team members from FLSE’s Service User Engagement team conducted a series of 1-2-1 and group discussions to collect unique perspectives from women who have experienced drug and alcohol misuse as well as with mixed gendered peer-led creative recovery groups. The conversations centred around four questions:
1. How can we make it easier for people to access drug treatment and recovery services, and stay in contact with those services?
2. How can we ensure the mental health needs of people in treatment are met?
3. What is the best way to meet the employment and housing needs of those in treatment and recovery?
4. What else stops people recovering and why might they relapse? What would help?
Summary of Findings
Throughout these conversations there were common threads; regardless whether the individuals were currently using services, had used them in the past, or were themselves providing support at present. These consistent messages highlighted the following:
1. Trauma needs to be addressed as part of any treatment.
2. The need for a holistic approach to treatment and support; mental and emotional health, access to employment and housing, community support, etc.
3. The importance of personal development; rebuilding one’s identity, develop self-esteem, focus on assets, learn healthy interactions and relationships.
4. The power of peers; they act as role models, inspiration and aspiration.
5. The impact of the Recovery Community; that it’s not necessarily focussed on addiction, develops creativity, sense of community, enjoyment and fun.
Fufilling Lives South East has collaborated with the University of Brighton to conduct research on how local authorities can effectively support people with multiple and complex needs during the housing assessment process. The work draws together interviews with Fulfilling Lives Workers and existing academic research to present a detailed list of recommendations for local authorities.
It is well-acknowledged that mainstream services often struggle to engage with people living in complex situations and people with multiple and complex needs often go without the help they need (McCarthy et al, 2020). At the forefront of the disadvantages experienced by people with multiple and complex needs is the difficulties they experience accessing appropriate housing. There are significantly reduced housing options for people with multiple and complex needs and they are increasingly difficult to access.
Throughout their work and research so far Fulfilling Lives South East found a significant knowledge gap on approaches to the housing assessment process and how it can best support people with multiple and complex needs. Most people with multiple and complex needs will be assessed by a local authority at some point to see if they are eligible for housing support. This assessment is a crucial step and often happens when a person is most in crisis and in need of shelter. The process can be frustrating, long winded and invasive, therefore this research sought to develop a better understanding of effective approaches to this pivotal process that demonstrates a positive impact on their lives.
The three themes identified in the research lead to this list of recommendations for local authorities in how their housing assessments can best support people with MCN:
Follow a clear more concise assessment process, that doesn’t take too long to complete.
Ensure that the assessment process follows a trauma informed approach. This means being understanding of the trauma applicants may have experienced and ensuring the process is not re-traumatizing
Show compassion and kindness to the applicants.
Maintain confidentiality throughout the assessment. This includes providing a safe and private environment to carry out the assessments in order for applicants to feel more comfortable sharing their situation and experiences.
Take an interprofessional approach to the assessments, in which housing officers utilise the applicants existing support network. This could include working alongside the individual’s key worker who will know them well.
Allow for flexibility in the application process, work creatively around the obstacles that may arise when assessing people with multiple and complex needs.
During the spring of 2021, a study between Fulfilling Lives South East and the University of Brighton was conducted. With the client-facing work coming to an end for the project in June 2021, this study aimed to evaluate the use of strengths-based approaches FLSE and BHT Sussex staff employ, when supporting individuals experiencing MCN. This work drew together interviews with key workers and relevant literature to highlight the benefits and issues raised in a strengths-based practice.
A strengths-based practice is one that takes into account each person’s strengths and resources, abilities and skills, and, with the help of the practitioner, helps utilise them towards the attainment of personal goals (Rapp et al., 2005).
Strengths-based practice is not to just be nice or positive all the time, neither imposing a list of tasks on individuals, without them having a say in the process.
Instead, strengths-based practice iscollaborative, with the practitioner acting as a facilitator for the recognition of skills and goals; it is trauma-informed, acknowledging not only the adversities someone has faced, but also the strategies they employed to survive; and it is based on a hope-inducing, honest, open-minded relationship between the practitioner and the service user.
On service users: it helps create a different narrative for themselves and their life, one with strengths, skills, and capabilities, instead of only problems and deficits.
On workers: reflecting on service user’s positive attributes, boosts practitioners’ resilience, can protect from burn-out, and improves their work.
On other services: with more positive narratives on their hands and training on strengths-based practice, this new approach has only started to be embraced.
Service users might at first have a hard time thinking in a positive light about themselves and reflecting on their strengths and capabilities.
Frontline staff need to have small caseloads and a lot of time on their hands, to build on a trusting relationship, which is rarely the case the way services are commissioned.
There is huge lack of knowledge and training in other services, as well as a lack for “one-stop-shops”, which will treat individuals holistically.
This study will hopefully be one of the first steps in providing evidence for the benefits of strengths-based practice, so it will be widely embraced and employed in all sectors, but, of course, further research and training is needed for it to be established.
My experience with Fulfilling Lives has definitely convinced me: Strengths-based practice is a way of seeing other people and ourselves, and I believe it should be taken up by any professional who wants to do good in their line of work – I know I will.
Learning from our work so far and ambitions for the final year
Today is the seven-year anniversary of the start of the Fulfilling Lives South East Project which is led by BHT Sussex and funded by the National Lottery Community Fund.
The Fulfilling Lives South East Project (FLSE) is one of 12 projects across England funded to (i) provide intensive support for people experiencing multiple disadvantage (ii) involve people with lived experience of multiple disadvantage at all levels (iii) challenge and change systems that negatively affect people facing multiple disadvantage. More information can be found here.
Standing on the cusp of our project’s eighth year, we can reflect on distance travelled and look forward to the final year ahead.
The client facing work came to an end on 30th June and I have been humbled and privileged to work with some exceptional staff and clients over the years. Our local delivery partners Seaview, Change Grow Live, Equinox and Oasis Project have brought expertise, energy and creativity and enabled us to actively model the positive partnership working so needed by those experiencing multiple complex needs.
The project has worked with a total of 118 people across Brighton & Hove and East Sussex since 2014. Although the numbers are not high, every single one of those individuals’ lives have been characterised by enormous struggles, often since childhood, and the strength and resilience they have demonstrated in surviving and overcoming adversity has been truly inspiring. This has helped us to remain focussed and grounded in our purpose to achieve greater social justice for this group.
The project has made some good progress in achieving system flex and better outcomes for individuals. The work has included; advocacy work to enable access to long term specialist care and support; negotiating and enabling access to medical or community drug and alcohol treatment, reducing the burden on acute services; preventing and reducing repeat pregnancies and subsequent removal of children into care through proactive approaches to delivering sexual and relationship health advice; working with statutory partners to challenge stigma and demonstrating positive practice in successful engagement with this client group and trauma informed and trauma responsive work to enable clients to understand and manage their own feelings and be more in control of their own lives.
Our service user involvement and co-production work is thriving, and by actively providing a pathway to employment for those experiencing multiple needs, to date, the project has employed 41 individuals on its employment programme. The project has also provided a direct conduit to a wider group who have been able to share their insights and lived experiences to help inform changes and improvements in services. To date the project has supported a total of 119 volunteers with lived experience of multiple needs.
78 individual bespoke training sessions have been co-produced with the lived experience team and delivered to a total of 1300 recipients across the area. Topics have included trauma informed working, challenging stigma, and navigating complexity, among others.
The project has also made good progress in systems change projects, working with local partner organisations spanning health, adult social care, criminal justice, housing, domestic abuse, children’s services, and substance misuse sectors. Notable highlights have included the creation of an East Sussex temporary accommodation action group (TAAG) to foster improved communication and problem solving between stakeholders concerned with temporary accommodation; facilitation of cross sector forums to break down siloes and foster improved service responses for those experiencing coexisting substance use and mental health conditions; a collaboration with commissioners to evaluate a pilot trialling improvements to the local MARAC system; a multi layered project with B&HCC housing needs service helping to embed psychologically informed ways of working across the department; a long-standing partnership with the DWP, helping to improve understanding of and response to individuals presenting with multiple complex needs.
However, there is still so much work to do. In spite of some amazing work going on across Sussex, the system still stigmatises and fails many individuals with multiple complex needs, often exacerbating exclusion rather than reducing it.
In our final year we are absolutely committed to accelerating and completing all our current projects and demonstrating progress against all of our commitments for change (24 in total), as set out in the project Manifesto of 2019.
We want to leave a lasting footprint locally to enable the work on multiple disadvantage to continue. We are seeking system leaders to champion and nurture the work post FLSE, and continue the work with individuals, but also with services and the wider system, so that those facing multiple disadvantage are not overlooked, marginalised, and blamed but considered, better understood, and consulted with when planning and delivering services.
We will be launching a learning programme this month and sharing monthly updates on publications, events and themed pieces of learning throughout the final year of the project. To join our mailing list please contact email@example.com
In April 2021, FLSE published a blog about concerns in how the healthcare system responds to people experiencing multiple and complex needs (MCN). These concerns were logged between January and March 2021, and then reviewed by our client-facing specialist workers together with the Systems’ Change team as part of the OOPS (‘Overcome Obstacles, Provide Solutions’) Project.
This blog article captures our learning on this topic between April-June 2021 and acts as a follow up to our first reflection in March. this feels timely for our specialist workers because our front line support services come to a close at the end of June and even though our workers have championed the needs of our clients, there’s still improvements that can be made to the system to ensure people with MCN receive appropriate access to and support in healthcare services.
Similar to previous OOPS project learning, the last three months have shown that people experiencing MCN fall through the gaps and during the ongoing challenge of the Covid-19 pandemic, are missing out on valuable support services.
Between April and June 2021, the following five concerns were raised by our specialist workers:
Dentist registration– a client who wasn’t yet registered with a dentist in East Sussex wasn’t able to be taken on as an NHS patient to get emergency treatment in local dentist surgeries, so needed to access A&E instead
Lack of mental health support– one client was really struggling with their mental health and took an overdose on prescription medication. The client wanted to discharge themselves but was kept in the hospital under the Mental Health Act. A mental health assessment took place, but it was decided that the client wasn’t fitting the criteria to be sectioned. Unfortunately, this meant that the case was closed without a referral for further mental health support in the community.So, the client left hospital and continues to struggle with their mental health.
Prescriptions– during the last 3 months, one of our clients was released from prison but sadly, their prescribed medication was not prepared or organised prior to their prison release. Suffering from seizures due to anxiety, and being relocated to a new area, the client would need to see a neurologist to get these prescriptions. This had not been arranged as part of the release planning and the client did not have access to the necessary medication on their release. Shortly after release, the client had seizures. One of the seizures caused a fall, which led to a broken hand. Due to mobility impairments, the broken hand contributed to the client not being able to wash themselves. Unfortunately, another incident occurred and they broke their leg too. The client’s past traumatic experiences of hospitals have been overlooked by the prison medical team. The client is now in supported accommodation. Staff at their supported accommodation are trying to encourage them to go to hospital but so far unfortunately weren’t able to convince them. An official complaint has now been submitted to the Lewes Prison medical team.
Access and communication with GPs- One client was asked to book a GP appointment by phone to discuss a recent diagnosis. This diagnosis was communicated to the client by letter, without warning or preparation. The client wasn’t aware that his illness has progressed to a terminal stage which came as a surprise. This has meant that the client found out their terminal diagnosis via letter, not in person. Unfortunately the surgery wasn’t able to take their call to find out more because the phone line was busy and so the client asked the Fulfilling Lives specialist worker for help. This particular GP surgery’s rules didn’t allow the worker to make an appointment. Even the client’s social worker got involved and made numerous calls to the surgery to insist on making the appointment on the client’s behalf. The Social Workers persistent calls paid off and an appointment was made. The client then attended their appointment with support of the Specialist Worker.
FLSE has delivered client facing support for 7 years and during this time our workers have engaged with healthcare support systems and engaged with feedback and complaints systems. They have concerns about the effectiveness of these mechanisms to serve our client’s feedback and experiences. Two of our workers share their reflections below.
‘The NHS is really good at single issue solutions but when it comes to more complex/ dual diagnosis it’s a different story. Complaints processes need to be more personal, not one size fits all… because if the NHS isn’t fit for purpose for our clients, where can our clients go? They can’t afford to go private. (…) It is necessary for complaints systems to be simple, accessible and standardised. The current systems, such as PALS, doesn’t have the resources to deal with the number of complaints- especially if they are complex. Advocacy services also seem to be understaffed to help our client’s voices being heard. Resourcing is a big issue.’
‘A personalised approach is needed in which clients are supported to reflect on their experiences in their own words. The complaints’ systems are very fragmented, and our clients unfortunately seem to be bouncing around a lot.’
One of the Solutions
In our experience at FLSE, even if specialist workers understand the process of escalating concerns and are equipped to navigate the system, they often feel that the process is bureaucratic, ineffective, time consuming and slow. There is a sense of distrust that the complaints process has the welfare of patients at the heart.
Experience has shown that our Specialist Workers and clients prefer to solve problems right there and then in an informal way. Unfortunately, informal issues or complaints don’t get recorded and it is difficult to demonstrate impact or changes to the wider complaints system using these informal channels. PALS in Hastings was also identified as difficult to access during Covid-19 because there were no phone numbers and complaints needed to be made in person in the hospital office.
We have asked our Specialist Workers what difference it would make to their clients, if the official systems to challenge and escalate unsatisfactory responses and care would be easier to access.
The answers were pretty clear:
If there’s a simplified and standardised complaints system, that is fully resourced and trained to deal with a multitude of people, it would help clients with MCN to take control of their own care and support. It would empower them to demand better services and give them a voice to share their experiences with the system.
If you would like to hear more about our work in healthcare, then please do get in contact with Michaela and Rebecca in the FL team:
Michaela Rossmann, Systems Change Officer: firstname.lastname@example.org
Rebecca Rieley, Systems Change Lead: email@example.com
This brief and accessible guide gives practical hints and tips on how to apply the principles of trauma-informed practice to research activities with vulnerable groups, notably those affected by multiple disadvantage. The guide contains interactive checklists for carrying out focus groups, one-to-one interviews, and conducting observations.
Who is this for and how should it be used?
The guide is suitable for evaluators, researchers (including peer researchers), service leads, commissioners, or anyone else who would like to conduct research with vulnerable groups. It can be used as a point of reference to help plan for and reflect on the research journey, making sure researchers have structures in place to support themselves and the participants throughout the process.
Why a trauma-informed approach?
We have found that people experiencing multiple disadvantage are often eager to share their experiences and contribute to learning and research to help bring about positive change in services. However, inviting people to talk about their experiences has the potential to be re-traumatising. A trauma-informed approach to research activities involves researchers establishing safety and trust with participants, allowing them to share openly and participate collaboratively.
How did it come about?
The guide combines the author’s specialist knowledge of research methods and an understanding of the importance of a trauma-informed approach gained through conducting co-produced research with people affected by multiple disadvantage.
During its development, the guide was shared in a working group attended by staff and volunteers with lived experience of multiple disadvantage as well as those with extensive experience of supporting this client group. The working group gave feedback and advice on the content and direction of the guide, and their contributions were invaluable. The guide was designed by Ben Pickersgill, Media and Communications Officer with Fulfilling Lives.
In just over six years of client facing work, the Fulfilling Lives project has worked with a total of 69 women across the three project areas of Brighton & Hove, Eastbourne and Hastings, of a total caseload number of 118 clients. The Fulfilling Lives offer is a flexible one; a mixture of practical support to address immediate safety combined with psychosocial, trauma informed interventions to support behaviour change, and has had a hugely positive impact on the lives of many of the women with multiple and complex needs that we have worked with.
Sometimes the more interesting learning comes from exploring where things haven’t been successful however. In spite of the intensive and flexible support offer from FL, some individuals haven’t been able to make significant change in their lives and remain stuck in patterns of repeat offending. Work has remained focussed on immediate crisis and risk-led interventions, rather than on planned or preventative work to support individuals to break the cycle of reoffending.
The women on our caseload who are in contact with the criminal justice system have some of the most complex difficulties of any of the clients working with Fulfilling Lives. All have mental health diagnoses, including anxiety and depression, personality disorder and bipolar disorder, all use alcohol and drugs and all have experienced domestic violence and abuse.
These individuals are engaged in repeat cycles ofoffending, often driven by active addiction. They receive short custodial sentences and are regularly released as street homeless where the chaotic nature of their lives leads to breaching license conditions and being recalled to prison after only a short time in the community.
The majority of female offenders with complex needs are also victims; this does not, however, result in them receiving better coordinated support.
The majority of female offenders with complex needs are also victims; this does not, however, result in them receiving better coordinated support. It is widely accepted that women need a dedicated pathway of support that takes account of the multiple trauma experienced and their victim status; but there remains a shortage of trauma-informed, gender-specific interventions for women locally.
At Fulfilling Lives South East we have worked really effectively with local multi agency partners including CRC probation colleagues (soon to be National Probation Service), Brighton Women’s Centre, Oasis and others in coordinating creative and flexible support arrangements to maintain positive engagement with women experiencing multiple disadvantage in the community. However, much of the positive work achieved in the community can be interrupted by recalls to prison which interrupt housing and support plans in the community.
We have recent case studies which highlight how women are trapped in cyclical offending patterns often driven by mental distress and desperate cries for help. The offender journey here highlights how a woman supported by Fulfilling Lives experienced mental health crises in the community after leaving prison homeless 3 times in one year; a cycle which was only broken by identifying a suitable accommodation placement on release with high enough support to manage her mental health needs.
The Fulfilling Lives project is committed to systems change. However, in terms of affecting real change, the systemic issues which contribute to these patterns of behaviour are difficult to tackle at a local level alone.
We know that short sentences don’t contribute to recovery or stabilisation.
We know that short sentences don’t contribute to recovery or stabilisation. The solution must lie in taking a genuinely systemic approach in addressing the underlying issues which are driving women to offend.
We don’t need to seek the answers. Many of the recommendations outlined in the 2007 Corston report are still relevant and mostly still not implemented. We want to see more specialist women’s support in the community, more liaison and diversion schemes to divert women away from custody into support and sentencing reform with greater use of alternatives to custody and women’s community support services.
With these national changes in place the excellent work that is happening locally to coordinate multi agency case support in the community for all women experiencing multiple disadvantage can be embedded further and more lives can be turned around.
Author: Jo Rogers, Senior Manager, Fulfilling Lives South East Partnership