Tag: Healthcare

The Intermediate Care ‘Step Away’ model

Fulfilling Lives South East

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

Sharing learning

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

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

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

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

FRAILTY

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

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

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

OUR LEARNING

We have shared our learning from the ‘Step Away’ service at the Pathways from Homelessness Conference in March 2022 to a wide audience.

We know that a small group of complex patients have more intensive support and care needs. The frailty score is a key tool to identify people’s level of support and care needs, incl. poly-pharmacy issues and raising concerns around personal care needs and mobility.

It is a tool to communicate well the health and care needs of another person to different parts of the wider support system, such as housing and adult social care teams, without too much clinical language. This makes it more accessible across professional teams sitting in different parts of the system. It also helps younger patients to better understand their own frailty and the implications this may have on their lives.

WHAT WE WOULD LIKE TO SEE NEXT

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

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

Authors:

Michaela Rossman and Rebecca Rieley

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

System Change Officer

michaela.rossmann@sefulfillinglives.org.uk

Rebecca Rieley, Systems Change Lead:

rebecca.rieley@sefulfillinglives.org.uk  

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Strength-based working and Multiple Complex Needs

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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).

Good Practice

  • 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 is collaborative, 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.

Impact

  • 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.

Challenges

  • 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.

Read the full report: here.

Author: Dora Soulantika

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: michaela.rossmann@sefulfillinglives.org.uk

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

Cracks in the system – Part II

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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.

Following Up

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.

Concerns raised

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.

Worker Reflections

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: michaela.rossmann@sefulfillinglives.org.uk

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

Reforming the Mental Health Act- our perspective

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On the 21st April 2021, Fulfilling Lives South East (FLSE) fed into the latest Mental Health Act (MHA) consultation to reform the current mental health laws to make sure that the voice of people with multiple and complex needs (MCN) is being heard. During Mental Health Awareness Week we have taken a moment to consider how mental health legislation has developed over the years and consider what impact these laws have on local practices for people with MCN.

The MHA has come a long way since it was introduced in 1959, a decade after the NHS was established. There have been multiple reviews over the years and in 1983 the issue of consent was introduced, before the Mental Health Capacity Act was created in 2005. Since then, over a decade later in 2017, the government asked for an independent review of the MHA to be conducted and it concluded that the MHA doesn’t work well for patients or families or carers and 154 recommendations were made. The view was that the existing legislation went too far in removing autonomy and did not protect a person’s ability to make their own decisions in their own care and support.

The 2017 independent review created the basis of its latest national consultation and planned reform which FLSE fed into.

As a project, we welcome the new guiding principles of choice and autonomy, least restriction, therapeutic benefit and the person as an individual. FLSE is very aware that these principles are important but so is a clear definition of the threshold for when a person can and cannot be sectioned. In our experience, people with MCN going through a mental health crisis, having experienced complex trauma and with enduring mental health issues, don’t always meet the threshold. One of our Specialist Workers reflected on these principles with the following experiences:

‘This emphasis on autonomy has been interesting for me as a worker. In my experience, several of my clients have been detained under Section 136 by police whilst having a mental health crisis. They are then brought to hospital for assessment and later discharged based on not being ‘detainable’. Although this complies with the current regulation, some of these individuals have then gone onto cause significant harm to themselves, and sometimes others. These incidents have at times then been criminalised, and a client has been arrested and held in custody, a matter of days after being sectioned by police. Being detained in police custody was due to antisocial and aggressive behaviour, but this behaviour had been preceded by multiple overdoses and attempts to take her life. For those clients I have worked with, who have seemingly less detainable mental health issues like personality disorders and significant trauma, there have been times where not sectioning a person has resulted in them being in the community without appropriate support.’

As a project, we are concerned that the new MHA Reform does not address the government’s commitment to invest into mental health services and that it is left to local authorities to respond to the individuals support needs. This could create geographical mental health care provisions and inequalities. FLSE would call on the national government to set clear guidance for local authorities to avoid postcode lotteries and for national government to commit to funding services that are fit for purpose for people experiencing MCN.

We strongly encourage Advance Choice Documents to be consistently implemented, such as the Wellness Recovery Action Plan, and being able to choose a nominated person is also positive. With

both however, we are keen to see guidelines in place to ensure the patient is not coerced into nominating a specific person and that the patient is in a stable position when completing the Advance Choice Document.

We also welcome automatic referrals to the Mental Health Tribunal as well as more frequent reviews of patients to minimise the length of time a patient is sectioned- as long as there is appropriate community support in place. We would very much like to see a collaborative approach between mental health services and third sector organisations.

The focus on having the patient’s voice being heard and offering more advocacy could open up a more peer-led and expert-by-experience approach. We strongly recommend that any commissioning of new services needs to have coproduction through and through.

In addition, we would like to see separate regulations for prisons and immigration removal centres. We also think that people with learning disabilities and autism have different needs and as such should be looked at separately.

Feedback mechanisms and complaints procedures for patients are unclear and we would like to see dedicated specialist mental health services for people experiencing multiple and complex needs that incorporate trauma informed approaches.

If you would like to hear more about our work in Mental Health, then please do get in contact with Michaela and Rebecca in the FL team:

Michaela Rossmann, Systems Change Officer: michaela.rossmann@sefulfillinglives.org.uk

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

Cracks in the system?

Fulfilling Lives South East2 Comments

A deeper look into concerns about the healthcare system’s response to people with multiple and complex needs

Our learning so far

Fulfilling Lives (FL) is committed to supporting Systems Change in Healthcare services and structures for people with multiple and complex needs (MCN). We recognise that it isn’t an easy task to influence large systems like the NHS  but at the same time we would like to encourage workers from all organisations and services to feel confident in escalating concerns about the healthcare system on behalf of their clients as we see this as an opportunity to bring about positive change: it is a way to log learning, share it and look to explore resolutions That is why one of our goals is for ‘Workers who support clients with MCN will be informed and empowered to use official systems to challenge and escalate unsatisfactory responses and care.’

Over the last six years, our specialist workers have supported numerous clients in Brighton and Hove, Eastbourne and Hastings to access primary and secondary healthcare services, including psychological healthcare services.

According to our workers, it has been clear that our clients have low expectations when it comes to healthcare support. This includes how they expect to be treated by staff. Sadly, some of our clients’ experiences only reinforce these low expectations.  For example, one client was transferred from temporary accommodation into a care home setting. Within 24 hrs, the client’s GP cancelled the daily prescriptions without giving the new GP and pharmacy time to transition his care effectively and get the prescription ready. Other examples include stigmatising practice observed by the specialist workers and challenges for clients to access the care they need. Not all our clients’ experiences are negative. On a different occasion, one of our support workers encouraged a client to make an appointment at a GP practice – something they were fearful of doing. On arrival at the surgery the client was reluctant to check in with the receptionist, but with some persuasion he did. In contrast to his expectation the receptionist welcomed him and understanding his anxiety stated we could wait in the quieter areas of the waiting room and she would come and get us when he was called in. Then, the nurse and GP saw this client as a person (not just a file) and this whole experience gave the client the confidence to return for the follow up appointment and make and attend several more.

How we are responding and why bother?

We value our specialist workers and their role to not only find solutions to healthcare issues faced by our clients on a daily basis but we also appreciate their role in advocating on their behalf and raise concerns when they observe concerns. But we needed more data to check if concerns are isolated cases or whether these concerns are more frequent across the local areas and pointed to something more systematic. That is why FL has launched the internal ‘OOPS’ (overcome obstacles, provide solutions) Project in December 2020, where specialist workers can log observed concerns, get peer support through regular Sub Group meetings and identify trends of concerns and solutions to these concerns together.

The Systems Change Team was keen to understand better the concerns that our Specialist Workers have when it comes to supporting clients through healthcare issues. These concerns might not always be about writing an official complaint to a healthcare professional, but to observe daily obstacles within the system. This might range from not being able to make an appointment with a GP on a client’s behalf, to keeping track about hospital discharges happening on a Friday afternoon for those who are homeless. Usually, these frustrations aren’t recorded but we see them as small cracks within the wider healthcare system. 

The OOPS Project launched in December 2020 and between then and early March 2021 we recorded 7 key concerns in Brighton, Hastings and Eastbourne.

Concerns raised

Here are the type of concerns raised:

  • Health provision in prison – Not being able to get an appointment with the mental health assessment team to review our client’s treatment.
  • Access to pharmacies and dispensing during Covid 19 – Dispensing bulk prescriptions, such as methadone, during lockdown instead of individual dosages.Another client has been banned from most pharmacies and the only one our client can access is 2 hrs drive away.
  • Transitions between GP surgeries – One of our clients has been transferred into a care home in a different area which meant that the GP has cancelled all prescriptions within 24 hrs of the move due to being out of area.
  • Access to the perinatal mental health team – One of our clients has had a child removed after giving birth and the perinatal mental health team can’t support the client as they only work with mothers who keep their children.
  • Support staff response to client engagement challenges – A client with a coexisting condition of substance use and mental ill health was referred to SPFT for mental health support. The worker tried to contact the client 3 times but wasn’t able to reach them which resulted in a frustrated email to our specialist worker. However, the client did leave a message for SPFT but the message wasn’t followed up on. 
  • Hospital discharge and follow on rehab – Our team felt there has been a lack of effective joining up of services for a client being discharged from hospital due to alcohol cirrhosis and the rehab services. After the detox in hospital, the transition was not as smooth as it could have been – consuming alcohol could have fatal consequences and this was a high risk.

Raising concerns in the context of the pandemic

It’s now been a year since the pandemic hit the UK and in March of 2020 there was a push to get the homeless communities into emergency accommodation, which created its own issues and problems. Some organisations blanket prescribed a two-week supply of methadone to recipients but ceased face to face appointments, testing and offered limited phone contact.

With most services suspending all face to face interactions with people and an emphasis placed on the wider use of digital devices and phone contact, those with MCN have been left to manage with minimal or no support from the statutory and many non-statutory health services. This has meant that clients and services often relied on FL specialist workers who continued face to face support to escalate concerns and advocate on our clients’ behalf. The pandemic has shown the health inequalities in our society and people experiencing MCN fall through the net. Raising concerns, when resources are thin on the ground, involves having emotional energy and lots of patience as well as time to get them resolved. With FL client-facing work ending in June 2021, FL specialist workers continue to focus on the best outcome for their clients, which in some cases means circumnavigating the system because complaints’ systems are felt to be slow and difficult to navigate.

One of our Specialist workers said: “The NHS closed everything from GP surgeries to wards, with their focus on Covid-19.  Initially it was impossible to contact any NHS services and as time went on this did not get any easier, again there was a desire to make everything online.  I found accessing my GP, virtually, easy but then I have access to a computer and the internet, as do many other people but many of our clients do not have smartphones or access to the internet, many are not computer literate and some find having a conversation by phone to be very distressing.  I supported a client to make an appointment to see his GP, yet despite me speaking with the surgery about the difficulties he experiences when talking on the phone, the surgery arranged a phone consultation, which resulted in my client feeling he had wasted everyone’s time and he did not discuss what he wanted to with the doctor. The media also created fear and a sense that the NHS was not to be disturbed, so many clients and members of the public in general ignored health issues.”

Useful resources when making a complaint

Obviously, sometimes an official complaint needs to be made and there are different guidelines on how to make a successful complaint. We’ve listed ways to do this below to help client-facing workers have a useful summary of the existing support and guidance to do this.

Local hospitals have a Patient Advice and Liaison Service (PALS). This service can give you information about the hospital’s complaints procedure.
It is important that you complain directly to the person or service (such as your GP or dentist). 

A challenge is often finding out what a services complaints procedure is, obviously there is a generic NHS complaints policy.

As a worker or individual, you can also complain to your local Clinical Commissioning Group (CCG), who funds the local healthcare services. This would be after all other options have been exhausted.

The Advocacy People (formerly SEAP) is the commissioned health complaints and advocacy service for East Sussex.  During the Covid-19 restrictions making referrals has become more difficult and at times communication with the service has been limited.

If the above has failed, then there’s also the option to contact your local MP.

Your local Citizen Advice Bureau or Healthwatch can support you and guide you when making a complaint.

The Ombudsman can also help if a complaint is first logged with the provider directly but the outcome hasn’t been satisfactory. They can make independent and impartial decisions on complaints and they have created a useful leaflet with the top 10 tips on making a complaint to the NHS England.
Tips on making a complaint to the NHS in England | Parliamentary and Health Service Ombudsman (PHSO)

What next?

We plan to continue with the OOPS project for a further 3 months and use this learning to further inform our understanding of the gaps and barriers in the healthcare system facing people with MCN. However, we hope to pair this learning with conversations with partners to explore how we can shed greater light on key concerns and start conversations about how we can collaborate to resolve them.

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: michaela.rossmann@sefulfillinglives.org.uk

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

Personal reflections on witnessing child removal

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Repeat removal of children into the care system is sadly a common experience for the women that are supported by Fulfilling Lives.

Repeat removal of children into the care system is sadly a common experience for the women that are supported by Fulfilling Lives.

The latest government statistics from the 31st March 2020 suggest a 2% increase in children who are looked after, with the total UK wide being 80,080 children.

The following article focusses on reflections of two Specialist Women’s Workers at Fulfilling Lives (FL) who, over the years, have supported the same client through removal of her children; the latest one being during the Covid-19 pandemic.

The article talks about the impact of witnessing a child removal in hospital has had on them on a professional and personal level but also highlights some of the obstacles and stigma women with multiple and complex needs (MCN) face; as well as the need for specialised advocacy and support services.

Some Background

The following experience is about Marie (not her real name). Marie experienced multiple trauma during her childhood and has a history of substance abuse. Due to a diagnosed learning disability, she struggles to recount information which is given to her; indicating that she might not always fully understand the meaning of what was said.

Marie’s previous five children were removed from her care by a different local authority several years ago.

Pre-Covid 19

Alice, one of the Specialist Women’s Workers for FL, reflected that when she attended a meeting with Marie, organised by two children’s services social workers assigned to her, that Marie must have felt confused and anxious throughout much of the process of having her previous children removed. This reflects the experience of many women supported by FL. It can be daunting to try and understand childcare proceedings with social services being involved as well as court or hospitals.

The reason for the meeting with the social workers was that Marie became pregnant again and Alice felt an immense amount of pressure to ensure Marie understood what was happening throughout her pregnancy, and what could happen to her child. Alice also wanted to make sure that Marie was represented sufficiently. Alice said that “This felt incredibly important, and I was left wondering what would have happened in the meetings if Fulfilling Lives were not supporting Marie.”

Marie seemed to ‘slipped through the net’ of services; not complex ‘enough’ for specialist learning disability services, but too complex for other mainstream services. This was a constant frustration.

Without FL’s trauma informed support, it would have been unlikely for Marie to be able to engage in the process. This included supporting Marie through creating a family history, a triggering and traumatic period of her life. Marie was tasked to seek legal aid due to children’s service’s involvement with her pregnancy. Again, without a support worker it is highly unlikely she would have been able to navigate this due to her limited comprehension skills.

Alice said that “Throughout the process, I often felt that by advocating for Marie, I was in some way undermining her child’s safety and advocating for an unsafe situation for the unborn child. For me, advocating for Marie was not mutually exclusive with ensuring the child was safe. I was not advocating for her to keep her child, but for her to be treated fairly and with understanding of her complex needs. It became clear with Marie’s case that there needs to be support for women who in all likelihood will never be allowed to directly parent, or have parental responsibility over, their children. Her mental health significantly declined when her child was removed from her care in hospital after the birth. As a result of this she disengaged from my support. Writing about this experience has dragged up some uncomfortable and upsetting memories for me. Going through the process of seeing Marie’s pregnancy develop, her buying clothes and toys for her child, and knowing the child would be removed, led to some vicarious trauma for me. During this period I had to administer CPR to Marie after she was found unresponsive at her accommodation whilst pregnant, as well being present when her child was removed. I found it difficult to maintain a professional boundary with someone who was going through such intimate and emotive things in front of me.”

During Covid 19

A little while after Marie’s child was removed, she became pregnant once more and started to engage with Fulfilling Lives again. This time Gemma, another Specialist Women’s Worker supported Marie. Gemma also witnessed Marie’s child being removed in hospital and she agreed with Alice about the experience of witnessing this event. “As a worker I have many years of experience supporting women who have had children removed from their care and at times helped them regain contact with children and supported them through the legal process. This was the first experience supporting a woman throughout pregnancy and at the hospital after the birth and during the removal by social services I felt very out of my depth. It was very hard to witness and sit with the trauma this woman was going through. Having worked with her for 18 months, I felt the need to protect her at times and avoid further re-traumatising. There have been times through this process that I have felt very overwhelmed with emotion but had to remain professional and swallow down the anger and sadness I felt in order to continue supporting the client.”

For Gemma, the process of Marie’s child being removed during the pandemic highlighted some flaws in the system. Due to Covid-19 restrictions Marie and her partner never met the children’s services social worker and advocates in person. All of their support was provided via phone which was a real challenge for Marie and often resulted in her feeling overwhelmed. Gemma observed that “most support services had not spent time with her 1-1 due to COVID so couldn’t get a real sense of her struggles and would often look to me to carry out work and offer support.”
Gemma attended Marie’s midwife appointments in person with her to make sure she understood the process and the information provided.
Advocating for Marie’s needs to be met by other workers has also been a challenge and took a lot of energy. Gemma’s impression was that support services and staff lacked insight and awareness and would often misunderstand Marie’s behaviour. She feels that women need to keep the identity of being a mum throughout the process of having a child removed and start the healing emotionally.

Where To Next?

Gemma and Alice have both highlighted the importance of working in a trauma informed way with women with multiple and complex needs who go through childcare proceedings. In order to do that, specialist workers and other support workers need a safe space to reflect; and clinical supervision is crucial to this.
Supporting women who have experienced removal of a child or children can bring stigmatising attitudes from professionals; but it is so important to take a person-centred and multi-disciplinary approach to make sure that mothers, not just the children, are being supported and looked after in order that they are able to heal and reduce the harmful cycle being repeated.

Authors – Gemma, Alice, Michaela

International Women’s day 8th March 2021

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International Women’s Day – Time to celebrate the resilience and courage of women with multiple and complex needs

For International Women’s Day 2021 Fulfilling Lives South East would like to focus on the extraordinary Women with Multiple Complex Needs we work with and highlight that, despite enormous inequalities and trauma, they are survivors. They may not lead multinational organisations but they are incredibly strong women who work hard every day to take positive steps towards a better happier life, despite the world of stigma, abuse, judgment and unfairness they face every day.

Below are the reflections of one of our Women’s Workers:

“What I am amazed about working with Woman who experience complex needs is the resilience they show. It’s easy to get caught up in what isn’t working well but let’s remember what they have survived and use the strength to believe in ability to change. I have learnt so much about my own resilience in this work and have been challenged more than I ever have in my career, but seeing the results is worth it. Hearing someone say for the first time they felt understood, safe and held is massive for healing.

The women have taught me how to be more playful and use humour in my work as well as the need for woman to help each other up, not tear each other down like the rest of society. I have gained huge respect for these women but at same time seen the inequalities, stigma and re-traumatization our systems create for them. We can’t ignore this and need to keep fighting for change and seeing these women with the compassion they deserve.

Please take a moment to think whether you could get up and face the day after losing your children, experiencing abuse and violence most of your life, being refused safe housing or treatment and feeling worthless? These remarkable women do, so let’s celebrate them on International Women’s Day and every day.”

We also, on International Women’s Day, celebrate our Women’s workers who daily have to navigate precarious pathways with the women they work with to try to ensure they receive the help they need and deserve when they need it. This is a lot to carry but they do so with professionalism, empathy humour and creativity. They too are strong resilient women and we celebrate them today.

So, on this International Women’s Day, show your support for women from all walks of life and follow the hashtags #choosetochallenge #IWD2021 for more information and to connect with others who will be celebrating women across the world.

Why Clinical Supervision Works for Us

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Here at Fulfilling Lives South East we have provided clinical supervision for our client-facing workers for many years. Clinical Supervision provides three functions: it supports quality and ethics of the work, it develops knowledge and skills, and it supports the wellbeing of the people who take part in it.

Conversations with specialist workers had indicated that they found clinical supervision helpful, but we wanted to gather more evidence. We asked external researcher Juliette Hough talk to the workers, area leads and the clinical supervisor themselves to find out more about how receiving clinical supervision had impacted the working practices. What we found were clear benefits for workers, clients and the wider project.

IMPACT ON CLIENTS

  • Cases were kept open and better supported as workers were equipped with new models, ideas and ways of approaching situations they previous felt stuck on
  • It helped workers to advocate for support from other services, and to increase other services’ understanding of people’s needs and behaviours.

IMPACT ON STAFF

  • Helped to protect staff from burnout and compassion fatigue. Several workers described periods of high emotional or psychological pressure that the clinical supervision supported them with
  • Created space for reflection and development Workers had the space to integrate new models and ways of thinking, building on their professional skills for this and future roles

IMPACT ON THE PROJECT

  • Reduced sickness absence and staff turnover. Workerssaid that without clinical supervision, they would have required more sickness absence, or would not have been to continue in the role. Providing clinical supervision costs us £563 per worker per year. Average costs of recruitment and selection in the third sector is £1,612 per role.
  • Safety and risk management Additional specialist support to navigate complex risk and safeguarding situations when they arise.

For clinical supervision to work well, we found that it should be provided one-to-one. This is to make sure the space feels safe and dedicated to the individual worker and their cases. Sessions should also be a part of a wider offer of support and training for workers, and is linked to support from managers and peers, organisational culture, self-care.

Clinical supervision was thought to be particularly important in organisations like ours which provide intensive support to people experiencing multiple disadvantage. It can be particularly important for workers working mostly alone, with limited peer support; and with personal experiences of trauma, multiple disadvantage or related issues.

You can read the full Clinical Supervision report here: Full Report

Author: Kerry Dowding

Collaboration between mental health and substance misuse services – what could it look like?

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Across 2020 South East Fulfilling Lives facilitated conversations with 17 professionals – both specialist and non-specialists – from across mental health and substance misuse services: ranging from clinical psychologists and commissioners, to leaders of organisations, services managers, and frontline workers. The topic being discussed was ‘what does good psychological support look like for people entering formal substance misuse treatment’.

We asked contributors 7 questions over the course of a 1-hour conversation and we have brought together these views into a report called The Perspectives Project . One of those questions was ‘To what extent do you think statutory mental health services and substance misuse services working together is important in aiding someone to access and complete formal substance misuse treatment?’

It is this area we’re are going to look at in a little more detail in this blog and review what contributors had to say in response to this question.

COLLABORATION AND CO-EXISTING CONDITIONS

By not working together, are we failing to meet the needs of people who have experienced complex trauma?

All the contributors to our work believed collaboration between support agencies is important, and all agreed it is not happening in practice as well as it could.

Joined up working should be an absolute minimum and was viewed as one of the primary challenges facing services. Operational teams shouldn’t be reliant on building good relationships with other agencies, collaboration and partnership working needs to be built into service design. More on this later!

Different Cultures, Different Structures

Many contributors reflected on how some of the differences between substance misuse services and mental health services have unintentionally created obstacles that slow down and hold back joint working and collaboration.

Professional divisions do exist between mental health and substance misuse services. It isn’t that workers decide not to cooperate with colleagues from other services. It’s that people are trained differently. Workers from both services work in different frameworks and to different professional accreditations.

Contributors to the report reflected that the current systems aren’t set up to be able to cope with a lot of the joint working that we know people with complex issues would benefit from. For example, things like consent and confidentiality, client records and communication are all approached differently within independent service structures. In substance misuse services diagnoses are not really used. You may say that someone is alcohol dependent or they’re non-dependent. But a diagnostic approach is not taken. Whereas, to qualify for lots of CMHT’s [Community Mental Health Team services], you have to have some kind of a diagnostic. And, that’s because anyone can self-refer into substance misuse services. Another key difference.

How services and systems not working effectively together impacts people complex health issues

All contributors reflected on the negative impact of services and systems not working together as effectively as they can to support this group of people.

Have we lost our grip on how to effectively support the most vulnerable complex needs clients? And instead of giving them less, do we need to give them more? More time and more choice.

There was a concern from some contributors that Discussions and conversations that were happening 40 years ago, are the same discussion we’re having today: Has the issue of how to effectively support dual diagnosis clients been cracked? Are we doing good enough by this group of people? We’re certainly working hard. We’re doing the best we can. But, if we’re honest with ourselves, are our current systems failing people?

IMPROVING COLLABORATION

Commissioning and KPI’s

We can improve collaboration between mental health and substance misuse services – lots of ideas and suggestions were shared in conversations.

An idea favoured by contributors who were working in non-client facing roles was for there to be joint key performance indicators (KPI’s) and joint commissioning of both substance misuse and mental health services. That both services should have to show evidence of communication and partnership building around joint client working. With the best will in the world. Sometimes things only work or only happen if there’s a KPI. Accountability to services to work in a certain way because they’re paid to, it’s a requirement of contract monitoring. Not something that’s aspirational.

Do mental health service and substance misuse services need to start being jointly commissioned? Some contributors felt this would be helpful.

Dual diagnosis teams and co-location of workers

Some contributors reflected that dual diagnosis teams and co-location of workers has improved collaboration.

Having experienced, well-trained complex needs workers who are embedded within services and who can cross those divides or differences that exist between services can be vital. The value of having this type of specific complex needs role cross cutting services needs promoted and spoken about more widely.

Having more support and input from clinical services/staff is very useful. Many contributors shared a view that specialist who can act in a more consultative, advisory way to non-clinical practitioners is something that would be good to develop further. the reality is that If psychologists are carrying out direct client support work, they will always carry small caseloads – there’s only a limited supply of psychologists in services. Thinking about the role of psychologists within the support system is important to widen the impact of their expertise. Clinical specialists supporting non-specialists within a psychological framework to deliver frontline support was felt to be where they could add most value.  That’s people on the desk in a busy service, in a needle exchange, in a pharmacy, and frontline workers supporting some of the most vulnerable people in our communities.

Services should be used for their core expertise.

FULFILLING LIVES SOUTH EAST VIEW

These conversations enriched and challenged our thinking and we are thankful to all those who contributed to this work. At Fulfilling Lives, we want to take these conversations forward locally to explore how we can test new ways of working informed by the views and ideas shared in the Perspectives Project. Collaboration is vital to supporting the multiple needs faced by those with multiple disadvantage and mechanisms to enhance the sharing of information, expertise and risks are key to this.

You can read the full Perspectives Project report here: Full Report

The Special Allocation Scheme: Our learning to date and recommendations for future developments

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Fulfilling Lives South East has reviewed how people with multiple and complex needs experience the Special Allocation Scheme (‘SAS’) and considered the healthcare system the SAS sits in to produce a report on the challenges and benefits of this scheme for patients. This report also shares a set of recommendations for how the Scheme could evolve to better meet the needs of those facing multiple disadvantage.

What is the Special Allocation Scheme (‘SAS’)?

Special Allocation Schemes throughout England were created to ensure that patients who have been removed from a practice patient list can continue to access healthcare services at an alternative, specific GP practice. According to NHS England, patients are placed on the SAS following an incident where a GP or member of staff has feared for their safety or wellbeing, resulting in the incident being reported to the police.

Perspectives of the Scheme

Our Specialist Workers have supported clients on the SAS to access primary healthcare via GPs and to date 12% of Fulfilling Lives South East clients have been active on the Scheme. This had highlighted some challenges clients on the SAS had experienced around the frequency and nature of reviews – when placed on the SAS, some felt they were destined to stay on the Scheme for a long time and for others, they were unaware that reviews should take place. Some clients also felt stigmatised by the Scheme. As such, we wanted to look at this further.

“Some felt they were destined to stay on the Scheme for a long time.”

When we started to research the Scheme, we initially started with a focus on our clients’ experiences and perspectives, however, we soon saw a bigger picture of challenges from different viewpoints and started to also look at the Scheme through the lens of commissioners and GP practices.

Commissioner perspectives: The name of this Scheme has changed over time from Violent Patient Scheme, to Special Patient Scheme to the current name of Special Allocation Scheme (SAS). Fulfilling Lives appreciates the change in name to make it less stigmatising for people on it and recognise how this reflects efforts to move towards a more supportive approach to helping people stay connected to healthcare services.

Locally, the Sussex Clinical Commissioning Group commission the SAS practices and currently there are three GP practices in Sussex delivering the scheme, which explains why some of our clients need to travel long distances to their appointments. However, we understand that not all CCG areas have dedicated SAS practices so the distance travelled here is less than others in England.

We also understand that when SAS services are put out to tender that they do not always generate interest from large numbers of GP practices and as such, Commissioners have to work with a small pool of interested practices.  

Lived experience perspectives: Our Experts by Experience, people with lived experience of MCN and Trauma, consistently emphasise that the most impactful and positive services to them are those that have focussed on the individuality of the person, treated them politely and respectfully and took the time to understand what their needs are. This includes reception staff welcoming them into the surgery.

One of our Specialist Workers however observed the following: “The way staff spoke to my client was unprofessional… I was also saddened by the disrespect shown towards my client and myself, added to this shocked that the security guards thought it was appropriate and acceptable to lock us both in a stairwell.”

The Commissioning team have reassured Fulfilling Lives that SAS practice staff receive training on Conflict Management and Fulfilling Lives are exploring ways that we may share our training on Trauma Informed Practice and Psychologically Informed Environments with these staff groups too.

Clients and patient perspectives:  Reviewing the official regulations provided by the “Primary Medical Care Policy and Guidance: Commissioning a robust SAS” it recommends a variety of reviews that people placed on the SAS should receive. However, nowhere in the document does it state that reviews are held together with patients and decisions regarding their continued placement on the scheme are made without their involvement. This is something our clients and Experts by Experience would like to see changed.

Another Specialist Worker says that “My impressions of the SAS in Brighton are that it is very good. Clients are given a 20-minute appointment, usually at lunchtimes and depending on what type of appointment they have may be encouraged to attend with a professional. To some degree I have to support clients to access the SAS and have their healthcare needs met. I have to remember that we are fortunate in Brighton in that health services for people who have MCN are largely good, do reflect upon how they could improve and do try and be fit for purpose. I think it really helps if I am able to see the positive side of a service such as the SAS because as well as acknowledging the negatives that the client sees about a service, it is my role to motivate them enough to attend appointments. Some clients like the surgery and others are less keen on it. Perhaps there is an element of shame attached to having to attend a surgery under the scheme but in my mind the scheme allows clients to have access to a GP instead of just being barred. ”

“Clients…feel they don’t receive the information about what it means to be placed on the SAS and information about how to get back into the mainstream healthcare services.”

Another challenge some clients experience is that they feel they don’t receive the information about what it means to be placed on the SAS and information about how to get back into the mainstream healthcare services. We understand that it is tricky for GPs to send information by post when some clients live in temporary accommodation and move around a lot. This has been identified as the main obstacle to undertake reviews and one of the reasons why some people stay on the SAS longer than anticipated. We also know from experience that clients change their phone number regularly and that a multi-disciplinary approach is needed to maintain communication and engagement with clients.  Our Specialist Worker observed that “there is an opportunity to communicate directly with patients when they attend appointments but sadly this does not appear to happen consistently and a chance to review how the patient could work towards ‘step down’ …is missed.”

‘Step down’ – a path back to mainstream primary healthcare access points?

Through research into the SAS and conversations with Commissioners we have learned of  a ‘step down’ system to support patients leave the SAS by keeping these patients connected to the SAS practice after being taken off the Scheme to provide continuity, independent of whether they are registered there or live in the area.

Through our work with people who have multiple and complex needs we view this ‘step down’ approach positively as we know that building, sustaining and enabling longer-term relationships with support services is important.


Recommendations for the future

Fulfilling Lives South East sees the potential of the SAS to be a gateway for people with multiple and complex needs into the mainstream NHS healthcare services, especially for those who are often thought of as ‘hard to reach’ and those who feel excluded from mainstream NHS services.

That is why we would like to recommend the following:

  • Create one consistent model of best practice on how SAS practices should be set up.
  • Have clear guidelines on the frequency and content of patient reviews and share these guidelines widely
  • Involve the patient proactively in their own review to have their voice heard.
  • Offer therapeutic services for people with multiple complex needs to support re-integration into the mainstream primary healthcare routes.
  • Support key staff in the SAS practices with training in Trauma Informed Practice and Psychologically Informed Environments.

  • The summary of our research and context of these recommendations can be found in our co-produced report Special Allocations Scheme: Recommendations for Systems Change https://www.bht.org.uk/wp-content/uploads/2020/12/Recommendations-for-SAS-system-change-FINAL_v4-21.12.20.pdf

Who are Fulfilling Lives South East?

Fulfilling Lives has supported clients with Multiple and Complex Needs (MCN) since the start of the project in 2014. Funded by the National Lottery Community Fund, as one of 12 partnerships across the UK, we are funded to:

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

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

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

Fundamental to the project’s ethos is the belief that the involvement of people with lived experience of complex needs is an essential part of the solution and to promote trauma informed practices. Further information about our project can be found here https://www.bht.org.uk/fulfilling-lives