swl tcp see me, hear me, support me feb 18 · see me, hear me, support me (south west london ccgs)...

See ME, Hear ME, Support ME (South West London CCGs) 1

See ME, Hear ME, Support ME

Report for the South West London Clinical Commissioning Group.

Written by:

Beverly Dawkins, Isaac Samuels and Sally Warren

26th February 2018


Table of Contents

Introduction 3 Listening to people and their families 4 Not understanding people’s needs 5 Lack of early intervention and prevention 6 Overuse of medication, restraint and sectioning 8 Fighting to get the right support in the community 9 Angels and heroes 10 Ensuring a different journey 11 The last word! 15 Appendix One: Good practice examples 16 Appendix Two: Glossary of terms 18


Introduction

‘I gave my time - it won’t help what happened to my family - because I/we want to make sure the families coming behind us don’t experience the same thing’.

(Mother)

The people in this report have told us many things about their experiences. Each story is unique but their lessons are sharply familiar. The fact is that in the 7 years following the shocking exposure of abuse at Winterbourne View, many families across the country have told their stories to organisations such as Mencap1, the Challenging Behaviour Foundation and the National Autistic Society2. Their stories thread their way across Twitter and Facebook. Every now and then they hit our television screens. Another shocking news item: the loss of a life, a terrible account of abuse, a mother appealing for justice, or a campaign to bring someone back from a facility hundreds of miles from home.

The stories of the families and individuals we met from South West London have their own unique characteristics but they have much in common that is consistent with the national picture. This report will set out those themes; include the voices of the people we met and excerpts from the stories we were told in more depth.

We would like to thank everyone who bravely and so honestly shared their stories and gave us their time, knowledge, creativity and skills to think with us about what it is important for us to know and understand about their experiences and what will help make things better for people in the future.

Going forward we would recommend that the South West London Partnership continue to engage with these people and their families at the heart of the Transforming Care Programme. Sometimes their voices are difficult to hear. They have stories to tell that are about appalling service failures and abuse, of people getting lost in a system that has wholly let them down. But there are also examples of things being done by services and individuals that did make the difference and did improve the outcomes for people. If we carry on listening to people’s voices there is real opportunity to learn and to design more responsive and person-centred services and transform the lives of the people at the centre of this programme.

1 Mencap and the Challenging Behaviour Foundation (2011) ’Out of sight. Stopping the neglect and abuse of people with a learning disability. 2 The National Autistic Society (2017). ‘Transforming Care: our stories. Learning from families’ experiences to transform care for people on the autistic spectrum, with a learning disability or both’


Listening to people and their families

The families we met with told us that they felt ignored and were often frustrated by having to re-tell their stories again and again. They felt that things often went wrong for their relative because the knowledge and advice they had tried to convey to professionals had been dismissed or cast aside.

A common theme in talking to families is that this incredibly rich and important information they hold is too often ignored. This is a scary reality for people when someone is sectioned. The experience of families is that they are totally ignored and have no legal rights. Only one family member felt strong enough to question what a ‘section’ means; to ask what their rights as a family would be and then said ‘No!’ to a section.

The result, for the majority, is that unhelpful and sometimes dangerous choices are made about where and how someone is supported. This has resulted in highly detrimental choices of placements being made and often greatly exacerbating the behaviours that challenge being displayed. If the knowledge of a person was listened to and embraced, things might have been very different.

Luke’s cousin stepped into his life after his mother, the last of his immediate family, had died. Believing that ‘everyone needs someone’ and despite having no previous knowledge or experience, Luke’s cousin has supported and advocated for Luke ever since. She wonders if it is because she is ‘only his cousin’ that her views on what would be right for him have often not been taken seriously.

Over time she got to know him and how important it is for people to understand what makes the world work for Luke. Luke has a keen interest in all things do with the 1950s - the food, the clothes and especially the cars. The world works best for Luke when the people who support him really take time to understand his needs - the very particular things that can trigger behaviour incidents (such a noisy people, his dislike of certain types of food and drink products, people with characteristics that make him angry and his need to be in control and to make choices for himself).

Luke’s cousin visits Luke regularly and knows the importance of good, honest straightforward communication and how he prefers the ‘here and now’ without too much lead in to upcoming events - especially if it is something he does not like, such as trip to the dentist. She knows that he likes quiet spaces and prefers the company of staff to others with learning disability or autism.

‘It is so frustrating that as parents you constantly have to re-tell your story to more professionals’ (A mother 2017)


Not understanding people’s needs

People told us how staff and professionals did not seem to understand the needs of the individual or listen to the advice given by the family. Families usually have very detailed understanding and experience of what is important to know about their relative but they felt that this was seldom heard, understood or acted on by professionals.

Families felt that sometimes staff and professionals may have lost sight of, or have never truly seen the real person within. Instead they felt their relative had become some kind of ‘other’ being. They felt that their loved ones just became the labels, the negative reputations and notoriety they had accumulated as they moved through the system.

Meeting people through the eyes of the relatives gave much more holistic visions. It was lovely ‘meeting’ people through their eyes.

Tim always enjoyed a close relationship with his sister Sue who has some lovely stories to tell of his early childhood. When Sue got a job she still spent time with Tim every week - cinema trips, trips out together. She says Tim was also ‘part of the deal’ with boyfriends.

‘People need to see the beauty in everyone. Give sparkle - everyone needs and is entitled to a little sparkle in their lives.’ (Sister)

‘Our norm is odd to others. They, even extended family and friends, just can’t understand.’ (Mother)

‘I would look at my brother smashing up the tables and chairs and think…this is not my brother.’ (Sister)

Peter loves being outdoors, walking in the wind and rain, mud….just being out. He was transferred to a placement where he did not get to go outside for 7 months because staff deemed it ‘too risky’. This was a massively negative experience for Peter who is now restricted to his room and a small courtyard. Here he usually walks around naked. He eats, watches TV and sleeps excessively. His mother commented, ‘Well what has he got to get up for?’


Lack of early intervention and prevention

The lack of timely and early help people had experienced had a very detrimental effect on both the person needing support and the family as a whole. In trying to support and care for their relative, families often became increasingly isolated.

People also felt that professionals were judging them. To some this meant they were scared to tell professionals about the reality of the struggle at home as they were fearful of being judged as poor parents. One family had experienced being added to the Child Protection Register for a few months without ever having understood why.

We heard again and again that people were only ‘heard’ when there was a crisis.

Luke was moved to a new service and into a situation that his cousin describes as ‘a total disaster’. Luke ends up being banned from most shared areas, reduces all his furniture to matchsticks and eventually hits someone over the head with a fire extinguisher and is removed from the service by the police.

Luke was first referred to a Psychiatrist when he was three. He started school but was soon excluded. His mother decided to home teach him herself after a series of home tutors did not work out. Luke’s family became increasingly isolated. Little was known about his early life but from what his cousin found out much later, was that his family had tried to manage his increasingly difficult behaviour themselves with no outside help. Incidents with a neighbour, in local shops and on a family holiday caused the family to largely withdraw him from all social contact. He only got to go out in the car and was rarely seen outside the locked doors of the family flat.

‘When families have the knowledge and skills, their confidence will increase. Anxiety and fear may go down.’ (Mother)

‘If I said these things to a Social Worker they would go into panic and start a ‘safeguarding process’ or something.’ (Mother)

‘First 5 years of life you struggle alone, little contact with services and no way of finding other families experiencing the same struggles’ (Mother)

‘Sometimes you are so exhausted you don’t even know where your next breath is coming from’ (Mother)

‘Support staff are often changed or given a break every 2 hrs or so. This is because people find my child hard to support. Parents don’t even get the

chance of a good night’s sleep’ (Mother)


Peter, one of three siblings was born, a lovely smiley baby. By the age of two he was beginning to have some additional needs. He didn’t like being left at nursery and by three and half years old was expelled from his mainstream nursery and started to attend a special nursery. With three children at different nurseries, his mum was exhausted and dreaded the calls from Peter’s nursery. Peter started school and his mum combined this and home teaching using the ‘Son-Rise programme’ to meet his educational needs. Having given up work to do this, his Mum became increasingly isolated and exhausted. Peter did not seem to respond to the programme and attended two further schools that eventually said they could not meet his needs.

Tim was a smiley, cute loveable baby and child. His family knew there was something different about him. The teachers at his first school didn’t seem to try to understand him and punished him for his different behaviour. He was bullied in the school playground. His family were told he was not capable of learning and would not accept him at secondary school. His mum started to teach him at home for 3 hours a day. The struggle for finding Tim a school placement still goes on. His parents refuse to accept some of the places where the children seem ’lost’ and like ‘inmates’.

Focus Group with Parents (Dec 2017)


Overuse of medication, restraint and sectioning

The families and individuals we met had much to say about the overuse of medication, restraint and the loss of control they experienced when their relative was sectioned under the Mental Health Act. Families of children and young people expressed real concerns about what would happen when people became 18 years old and that they could be sectioned and sent to a mixed adult ward.

Concerns about the use of medication, restraint and seclusion are well documented nationally (Public Health England (2015) Providing psychotropic drugs to people with learning disabilities and/or autism by general practitioners in England) and much work has been done, such as the recommendations made by NICE, to use more appropriate interventions without the use of medication (NICE (2015). Challenging Behaviour and learning disabilities: prevention and interventions for people with learning disabilities whose behaviour challenges (NG11) and Department of Health guidance about minimizing the need for restraint (Department of Health (2014), Positive and Proactive Care: reducing the need for restrictive interventions). The stories illustrate how implementing these recommendations should be integral in transforming the lives of the people at the centre of this programme.

Peter was held in a police van, handcuffed for 2 hours. He was sectioned and then admitted to a facility that was a 10-hour round trip from home. Peter lives in long-term segregation, is on a range of drugs and is locked in his room for most of the time. He is pinned down by 6 -7 staff when he attacks people, restraining him with a floor hold. Peter’s family are advised not to take him out and not to visit. He is confined to his room and a small courtyard where he eats, sleeps and watches TV - he walks around naked.

‘A total sense of ‘no control’ over decisions about my son. The System took my son.’ (Mother)

‘Stop telling me not to visit my son.’ (Mother)

‘I felt like I was in a black hole and had no idea how to climb out.’ (Father)

‘Injection in the bum - bad, bad.’ (Self-Advocate)

‘We could see the fear in his eyes.’ (Mother)

‘Once I asked the question about a section. I knew if we went ahead we would have no say in the care of my brother. We said ‘No!’…even though the last years

have been incredibly hard…we are so glad we did!’(Sister)


Fighting to get the right support in the community

The families we met who had either experienced periods when their relative had lived or were currently living in the community for a period, described this as a fragile, unsafe place with fear that support/liberty had been or could be lost as easily again. They report being very clear about the support needs of their relative, such as the design of the physical space required and the skilled staff support the person needs. Families also spoke of the need to have an advocate, a professional who really knows the person and their family - someone who will ‘stand in your corner…even when they have to disagree with their boss or the budget holder.’

However, because they feel that, as reported above, their advice may not always be sought or listened to, their relative’s needs not fully understood, their experience was very mixed. The families feel trapped in a system and remain incredibly worried about the future.

Peter’s family started to plan for the future - where he could live, how he could be supported. They found a property with good space, a private garden, a woodland nearby, just 15 minutes from but his commissioner put a hold on buying the bungalow, saying that the support needed to be secured first. The family helped the Commissioner to build up a pen portrait to share on the ‘Approved Provider List’. His family wanted him home for his 21st birthday in March but now know that this is not going to happen.

A new service was identified for Luke and the transition was very carefully planned. He is one of 12 people but has his own annexe with the facilities he needs. Things have started to improve again for him as staff get to know and understand him. His cousin trusts the staff and thinks that he is now in the right place.

‘Finding a way to get out of the hole.’ (Father)

‘His brother said, ‘Why can’t he go back to where he was safe? Why can’t he go back to where he was happiest?’ (Mother)


Angels and heroes

Where staff/professionals (notably described as heroes and angels!) did feature in their accounts as listening and understanding the person’s needs, they made a real impact on the families’ experiences. Families emphasised what a difference is made by the people who ‘get it’ and the ‘massive relief’ when they do.

‘Luke moved again, this time to a place where staff make great efforts to listen and understand his needs. They made adaptions to his physical space. He is calmer. He gets to go out on short trips in the car and to walk in the secure grounds.’

‘Tim’s behaviour changed - he complained of a pain in his chest, kept pacing, was withdrawn and started to dramatically lose weight. Tim’s health continued to deteriorate. An ambulance was called out twice but he refused to go to the hospital. However, on the third occasion a paramedic (described by the family as Angel 1) calmly chatted with Tim, followed him around the room upstairs and eventually encouraged him to come down in his own time. Tim still didn’t want to go in the ambulance and the paramedic suggested he travel by car with his family and followed the ambulance to the hospital.’

‘A Learning Disability Community Nurse (Angel no 2) came to the hospital and made sure that Tim was not ‘kicked out’ of the hospital and after a difficult 3 weeks in hospital (delays in getting tests and ‘no understanding from the hospital staff team’, a ‘wonderful female nurse’ (Angel 3) was assigned to Tim by the Director of Nursing. She was described as having ‘humanity, caring, attention and protection.’

‘A locum Australian Social Worker was appointed. He listened to Luke’s cousin and worked closely with her to search for a suitable placement. The Social worker went to visit the various options with her and listened when she said that one of the options would be ‘totally unsuitable and dangerous’. A service was found that works well for him.’


What is striking is how very few and far between these angels and heroes are, the exception and not the rule. The paramedic in Tim’s story turned out to have a brother with autism so his insight was personal and not based on training he was been given professionally.

These stories emphasise the importance of developing the skills of the workforce in areas that aren’t just practical but are based on human value, compassion and equality, and that those who need the training are not just the people in direct contact with the person but staff in wider services and agencies who should also be able to offer the right support.

Ensuring a different journey

The starting place for this work and our conversations with people and families was partly to explore and gain an understanding of a person’s journey to becoming an inpatient and then to ask what would have helped prevent admission.

The graphic over the page summarises the journey people described (the red line). The alternative journey (in green) details what could have ensured a very different experience: one of people receiving the right support, from the right people, at the right time and in the right place.

On page thirteen family members have suggested what could ensure a very different journey and experience for other families.

As mentioned in the introduction the stories of the families and individuals we met from South West London have their own unique characteristics but they have much in common that is consistent with the national picture. This report should be read alongside national reports including the soon to be produced NICE Learning disabilities and behaviour that challenges: service design and delivery guidance.

‘A support worker established a really positive relationship with Peter. He really connected and interacted well with him. When Peter was moved to another service, he travelled with him and stayed the night to help settle him in. The family said they would have liked the support worker ‘cloned’! The end of the story was not so good as the support worker only stayed the one night and when he was gone Peter was devastated.


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Diagram 1: The two journeys


What families say is needed

1) Get to really know and understand the children and adults at the heart of the programme.

People highlighted the importance of good quality Care and Treatment Reviews and Person-Centred Plans, Individual Service Designs and Education Health and Care plans that fully involve the person and their family, including a really detailed profile of the person.

2) Provide local, easily accessible Intensive Support Services

Families stressed the need for early help to prevent, reduce and manage crises. This is particularly important when the person is living at home. They had several ideas about what this should include:

• Flexible overnight respite - a 24/7 inreach and outreach service so that families and support staff know that they can access additional expertise or have somewhere for the person to be supported locally if needed.

• A helpline available that can arrange immediate support • Faster access to services when needed such as CAHMS – a triage system so

that the family is met within 2 weeks and support planning begins. • Education Health and Care Plans (EHCPs) should ensure that all professionals

who can help are identified so their roles are clear.

3) Ensure people and families know the reality and legal power of a section and how to avoid it

Only one family felt able to question the implications of a section and therefore managed to find an alternative. Others spoke of how professionals said a section ‘would be for the best’ and only later realised the full implications and reality of this.

4) Provide a ‘System Navigator’

Families wanted one person you can always phone: someone who gets to know the person and the family; and someone with good knowledge to guide families through the system. This person could be a Social Worker or a key worker but needs to be someone who is consistent. The ‘navigator’ needs to stays in contact with the family, supporting them as an advocate - someone who is ‘in their corner’ and who wants to achieve the best possible for the person and the family.

5) Open and honest communication and good information

Families say that they want open, honest and transparent communication. They also want plans and actions to be followed through in a ‘timely’ way. One important comment was the need for this to be ‘family-centred’ as well as ‘person-centred’. They want the needs of the family considered and supported so that the person can be supported in the best possible way. The families refer to the importance of


keeping the family well so that they can continue to support the person and not fall apart. Families want a clear pathway so they know where to go for immediate help.

6) Training for families

Families would like access to the training that staff and professionals get. They want to know about approaches like Positive Behaviour Support. They talked about peer support from other families and how important was that this is facilitated. They explained that when families have more confidence, knowledge and skills, their fear and anxiety will reduce and there will be better co-working with professionals.

7) The right place with the right support in the community

Families want to be part of planning this as they have in-depth knowledge of the individual and could share this knowledge so that important issues don’t get overlooked. They described how the small details make a service safe/unsafe for the person.

Families need to be listened to when they report that the quality of care is poor or inconsistent and want to work together to achieve the right support. They recognise that finding the right housing and support can be difficult but also know that when there is the opportunity to work together on this and get it right, in the long-run it is better for everyone. They would like services to be jointly commissioned and funded locally but recognised that this may need to be with neighbouring borough.


The last word!

One of the biggest themes in this report is how important it is to listen to people and their families.

We believe it is important that the last word goes to a man who came along to one of the focus groups. He told us about his direct experience of moving back to the community after spending many years under section, in a unit. Amazingly, he didn’t dwell on the many of his awful experiences. He focused on telling us that life is good and getting better. See below just some of the reasons why.

“Life is better now because I AM:

- choosing who supports me

- having a say in where I live

- feeling like people like me

- able to do the things I like doing

- supported by those who help me do the things I like

doing

- able to say ‘I don’t like something’

- able to communicate in the way that makes sense to me

- not told ‘No!’ all the time and able to make mistakes

- able to feel free and do what I want to do

- involved in conversations about medication and

treatment

- feeling able to live where I want to live

- OUT OF HOSPITAL! “ (Expert by experience)


Appendix One: Good practice examples

• Halton Positive Behaviour Support Services have been designed to increase the quality of life for individuals and reduce the incidence of high cost/poor outcomes. The underlying assumption of the service is that behaviour that challenges services is a result of the environment the person is in and to which they are responding. They have focussed their efforts into establishing a specialist service for children and adults that can respond on a preventative basis and as an early intervention. The service has four key arms: 1) Technical Support 2) Placement development 3) Crisis Prevention and management 4) Early intervention

They also recently gave evidence of their nationally recognised good practice and outcomes to the NICE Guidance Committee developing guidelines for support people with behaviours that challenge.

For more information: https://localoffer.haltonchildrenstrust.co.uk/positive-behaviour-support-service/

• STOMP is a national health campaign to stop the over-use of psychotropic medication to manage people’s behaviour.

For more information: https://www.vodg.org.uk/campaigns/stompcampaign/

• Beyond Limits was set up in 2011 is to change the face of services for good, and to provide tailored support to people who are vulnerable due to circumstance or disability or at risk of exclusion.

Their main experience is in working with people leaving institutional care, such as hospitals, group residential care, special educational establishments and people said to have challenged conventional services.

Their aim is to provide truly tailor-made support, designed so that everyone they work with can have: a home to call their own, which might be living with family, a real place in the community and control over their life and their future.

They also recently gave evidence of their good practice and outcomes to the NICE Guidance Committee developing guidelines for support people with behaviours that challenge.

For more information: http://www.beyondlimits-uk.org/about-beyond-limits/

• Getta Life offer truly person-centred support with people who have been failed by every hospital and/or provider they have previously been supported by.


Getta Life have made a commitment to supporting no more that 24 people, each with high and complex needs. They have produced a book ‘We’ve got a life’ that is an incredible resource for ensuring that the teams supporting each person are truly focussed on and remain focussed on the person supported.

Unfortunately, they have a very poor website (http://www.gettalifeonline.co.uk). Sally Warren (co-author here) supervises Sue Deely and Julie Smith who are the Directors. They can be contacted via: [email protected]

• Challenging Behaviour Foundation good practice examples of early intervention

For more information: http://pavingtheway.works/what-works/

Additional links:

• NICE Learning disabilities and behaviour that challenges: service design and delivery guidance: https://our.choiceforum.org/t/consultation-learning-disabilities-and-behaviour-that-challenges-service-design-and-delivery-draft-guidelines/4980

• Independent Review of the Mental Health Act. The two surveys produced by the Department of Health, to gain the views of service users and family carers, are still open and can be accessed at: https://www.gov.uk/government/groups/independent-review-of-the-mental-health-act.


Appendix Two: Glossary of terms

Education Health and Care Plan (EHCP): An education, health and care (EHC) plan is for children and young people aged up to 25 who need more support than is available through special educational needs support.

EHC plans identify educational, health and social needs and set out the additional support to meet those needs.

See: https://www.gov.uk/children-with-special-educational-needs/extra-SEN-help

Care and Treatment Review: Care and Treatment Reviews (CTRs) are part of NHS England’s commitment to transforming services for people with learning disabilities, autism or both. CTRs are for people whose behaviour is seen as challenging and/or for people with a mental health condition. They are used by Commissioners for people living in the community and in learning disability and mental health hospitals.

See: https://www.england.nhs.uk/learning-disabilities/care/ctr/

Individual Service Designs: No two people are the same. Ensuring people are supported to design and plan their life with those they love and trust is the very foundation of good support.

Individual Service Design is a process that enables people to think about their lifestyle and the range of support required and to create a detailed design/plan. A number of Transforming Care regions are ensuring ISD’s are facilitated to plan with each person moving from out of area placements.

See: http://www.paradigm-uk.org/wp-content/uploads/2014/10/Individual-Service-Design-3-SW-back-page.pdf

Sally Warren, Isaac Samuels and Beverley Dawkins (February 2018)

www.paradigm-uk.org

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