Transforming Care - Our Stories
Transforming Care - Our Stories
Transforming Care - Our Stories
our stories
Learning from families’ experiences to
transform care for people on the autism
spectrum, with a learning disability or both
As part of the Disability Partnership, with the support of the Challenging Behaviour Foundation
Chapter one: 5
Making sure the right services are available in the community
Chapter two: 11
Being heard and being involved
Chapter three: 16
Inconsistent care quality
Chapter four: 22
Making plans for discharge and sticking to them
Chapter five: 26
Specialist support and understanding – in the community and in
inpatient settings
Summary of recommendations 31
Glossary of abbreviations 34
– we use a number of abbreviations in this report. Please see our
glossary at the end of the report for an explanation of key terms.
By Tim Nicholls
Policy Manager, The National Autistic Society
1
This report refers to people who have a learning disability, people who are on the autism spectrum and people who may be both autistic and
have a learning disability. We use the terminology “people on the autism spectrum, with a learning disability or both” to refer to all people to
whom Transforming Care applies.
2
NHS England (2015), Building the right support.
3
When we refer to “inpatient settings”, “inpatient units” or “mental health hospitals”, we are referring to the range of inpatient mental health
provision in which autistic people, those with a learning disability, or both, may be placed under section. This includes assessment and
treatment units (ATUs).
4
NHS Digital, Assuring Transformation: Learning Disability Services Monthly Statistics (May 2017). Accessed 6 July 2017.
5
A further 95 are not autistic and do not have a learning disability.
6
NHS Digital, Mental Health Services Data Set (March 2017). Extracted 23 June 2017.
7
National Audit Office (2017). Local support for people with a learning disability.
8
The Disability Partnership was formed of The National Autistic Society, Mencap, Sense and Scope, as part of the Department of Health’s
Voluntary Sector Strategic Partners Programme.
9
In some instances, we were not able to carry out all three interviews, which is acknowledged in the relevant stories.
NHS England (2015), Supporting people with a learning disability and/or autism who display behaviour that challenges, including those with a
10
When we first interviewed Sally in September 2016, Maisie was at home, having been discharged
two days earlier. She had been an inpatient for seven weeks, despite the fact it was supposed to
be for two weeks. The hospital consultant had applied for Maisie to be sectioned on the grounds
that she had depression, psychosis and a ‘historical diagnosis of autism’, despite autism being
a lifelong condition. Local child and adolescent mental health services did not think Maisie had
psychosis. When the family appealed the decision, Sally said that the judge at the hearing “rubber
stamped” the application, without properly understanding autism – especially in women and girls.
Sally told us that most of the units that Maisie had been in were “hell on earth.” In addition to being
far from home at a young age, Sally said that the hospital environments, regimes and responses to
behaviour were not appropriate for a child on the autism spectrum, and staff training in autism was
generally very basic. There had been a number of safeguarding incidents, including Maisie copying
other patients’ self-harming behaviour or trying to escape. Communication with the family (even
following serious incidents requiring visits to A&E) was lacking and Sally felt her concerns were not
listened to.
Now, back at home, Sally told us that some support had been put in place, but a lack of co-
ordination between health, education and social care meant that there were gaps – particularly for
a child on the autism spectrum who does not have a learning disability. Maisie was due to start a
phased return to education at a specialist school for three days a week, although Sally was having
to push for support for the other two days. She was also pushing for appropriate mental health
crisis support, to prevent Maisie from being admitted again.
When we met with Sally the second time, however, Maisie was back in a unit in York – although
this time voluntarily. Prior to admission, the family had support from night sitters, but they were
not trained to manage crisis situations. They also received some support from the local crisis team
(whose introduction Sally had campaigned for), but its capacity had been limited. Sally explained
that she had not wanted Maisie to be admitted, after the very negative previous experiences, but
that there were no other options available and that she had become exhausted after 11 days of
supporting Maisie in crisis without sufficient help.
Before this, Sally had managed to get a personal budget for art classes for the two days Maisie
wasn’t attending school. However, in December these had stopped, along with the school
placement. Without structured activities, Maisie’s motivation and mental health were affected.
Maisie’s autism diagnosis, along with one of post-traumatic stress disorder had been confirmed,
so Sally felt more confident it wouldn’t be questioned again in the future. But Sally was becoming
worried that Maisie would simply be seen as a “yo-yo” patient who would continue to be in and
out of mental health hospitals. She highlighted that a Care and Treatment Review (CTR) had been
carried out when Maisie was in inpatient care before our first interview, but the recommendations
had “no muscle”.
When we met Sally for our last interview in late March 2017, Maisie was in a unit in Leeds, having
come home for a few weeks. Rather than being aimed at assessment or treatment, Sally described
this as a “holding placement” because the right services didn’t exist locally. Following a meeting
with her MP and with NHS England, there was an ‘in principle’ agreement to the bespoke support
Sally had found, but she was worried as there was nothing in writing.
NHS England had also contacted local commissioners to find out why no CTR had been carried
out when she was admitted in December, January or February. When it did take place, however,
Maisie had been put on the spot by commissioners with direct questions and had not been offered
advocacy. Maisie had started specialist PTSD therapy after an 18 month wait, although this had
been interrupted by admissions to inpatient care.
Sally said, “it’s left up to families to find out about sources of support and alternative providers
when existing services are not suitable.” She estimated that inpatient care over the past two years
has cost around £350,000, and questioned what could have been achieved for Maisie if this money
had been used to support her in the community.
Laura is 12 years old and has a learning disability and microcephaly – her speech is limited. We
spoke to her mum, Jane, three times over the year. Laura attends a school for children with special
educational needs during the day.
When we first spoke, Jane told us that earlier in the year, the family had been hit by a crisis. Laura
was living at home, but the family had been asking for help – in particular for Laura to attend a
residential school – for three years. Jane told us, “Every one of my requests for residential schools
was turned down because they said her needs were being met by the specialist school she
attended. But they didn’t address the fact of her challenging behaviour at home. Then crisis hit in
July 2016 – I couldn’t cope with her challenging behaviour anymore and I contacted social services
to say I couldn’t cope.”
Laura moved into a children’s home for children with learning disabilities. Jane was happy that the
staff understood Laura’s needs, although over the year she consistently complained that there was
too much reliance on TV and iPads, rather than physical activity. When we spoke to her last, the TV
in the lounge had broken, meaning that Laura was engaged in more activities. Jane saw this as a
positive, but feared things would return to normal once the TV was fixed.
After two years, Laura still does not have a finalised Education Health and Care Plan. Jane said,
“There’s so many parties involved when you have a disabled child. It’s as exhausting dealing with
all of them and constantly fighting and asking for support as it is caring for a disabled child.”
They also had a CTR in the community. Diane said, “Lots of independent people came in and
they see the residential home for what it is. They come from NHS England and they are good and
there’s a parental advocate. But the staff from the residential home didn’t turn up for the CTR and
afterwards said, ‘we’re throwing Oliver out because he’s ruined our CQC report’.”
Ollie’s parents had been told by the last provider that if they did not take their son home that day,
he would be sectioned.
Ollie’s local authority, Redbridge, assessed his needs and identified that he needed three-to-one
support. However, Diane could not find support workers who could meet his needs, meaning that
Ollie and his family went without the support that the council had agreed they needed. In fact,
Diane later handed £35,000 back to Redbridge that she wasn’t able to spend due to a lack of
suitably trained support workers. As a result, Ollie was spending most of his time in his bedroom,
unable to get out into his community.
Diane had found somewhere in Norfolk that looked promising and could meet his needs.
Redbridge Council supported this move. When we next caught up with Diane three months later,
Ollie had moved into his new home the week before. He was beginning to settle and the signs
were promising: it appeared that staff knew much better how to support him, especially if his
behaviour became challenging. Diane was receiving daily calls, visits were easy to arrange, and
accommodation was provided.
Over the next couple of months, things continued to progress, albeit slowly. When we last spoke
in March 2017, Ollie was going out about once a week. This wasn’t as much as Diane would have
liked and she had some concerns that the third person in the three-to-one support for going out
wasn’t always available. Ollie is also often anxious about going out. Having come off medication
when he left the last residential home, psychiatrists are now pushing for Ollie to have Risperidone,
which Diane is resisting because of the dangers of taking it with a heart condition.
The staff however seem to understand Ollie and his needs better. While there have been issues,
Diane’s experiences mean that she is no longer afraid to speak up.
During our interviews with Diane, we found out The Building the right support Service Model
just how close Ollie had come to being sectioned outlines what should be on offer, including
under the Mental Health Act – it had come down intensive support and crisis services.13 These
to a matter of hours, and he had to move home. services both need to be available 24 hours a
Diane had the support of her local authority day, seven days a week. However, Roger (whose
commissioners, who outlined a personal budget story is in chapter four) told us that he couldn’t
that was enough to meet Ollie’s needs. But access intensive support at the weekend.
services with the expertise to support him just
weren’t available. This put a huge amount of
strain on the family and Ollie wasn’t able to go Making sure discharge isn’t
out. Again, with the support of the local authority, held up
they found a new place for Ollie to live that would
meet his needs. Other families that we spoke to said the lack
of local community social care and mental health
In contrast, Jane has not had the level of support services was a reason for delayed discharge.
she needs from her local authority. Laura’s Following assessment and treatment, many
Education, Health and Care Plan has been individuals still require ongoing mental health
delayed for two years: the statutory requirement support.
in the SEND Code of Practice is 20 weeks.11 Jane
also felt that the local authority didn’t understand Under the Care Act 2014, local authorities have a
how Laura’s challenging behaviour was affecting duty to provide a local market of services to meet
home life. As a result, residential school places the needs of their population. However, the same
weren’t considered. duties do not apply to the NHS. The previous
Government’s No voice unheard, no right ignored
Department for Education (2015), Special educational needs and disability code of practice: 0 to 25 years.
11
NHS England (2015), Supporting people with a learning disability and/or autism who display behaviour that challenges, including those with a
12
NICE (2016), Mental health problems in people with learning disabilities: prevention, assessment and management [NG54].
15
National Audit Office (2017). Local support for people with a learning disability.
16
Fauzia attended an autism-specific school during the week, but due to the distance from home
and struggles with the daily transition to and from school, her behaviour became very challenging.
After trying respite services at the weekend for a time, it was felt that a 52-week residential school
placement would be best. However, Fauzia struggled being so far from home, so she started to
self-harm and her Tourette’s grew worse. Shahana told us, “in hindsight, she had also developed
obsessive compulsive disorder (OCD). The staff really tried, but they were tired. Fauzia stopped
accessing education: she needed assessment and treatment.”
Fauzia’s move to an inpatient unit was traumatic – there was no transition. Shahana said, “She was
put in a private ambulance and tied down. The consultant at [the hospital] didn’t know Fauzia was
coming and the ward wasn’t prepared for her.”
Fauzia remained in hospital for two years. After being in seclusion for the first few weeks, she was
moved to an “Extra Care Facility” – a room next to seclusion, separate from the main ward. “The
only exposure she had to her peers was as they went past into seclusion,” Shahana told us. For a
year, she only received three half-hour sessions of education a week.
A major obstacle was that the right people weren’t invited to meetings, so the family had to invite
them, and social workers kept changing. Shahana found an education representative to attend,
which resulted in Fauzia’s education being increased to three half-hour sessions a day.
Shahana then heard about support that some charities are able to offer. She contacted the
Challenging Behaviour Foundation, who invited her to a meeting with the Care Minister Norman
Lamb. He got involved, visiting Fauzia and calling a meeting with national and local commissioners.
“We were incredibly lucky,” Shahana said.
At this point, there was still no discharge plan. “They gave her heavy doses of anti-psychotics, but
she had no psychosis. They didn’t acknowledge her Tourette’s and so thought, despite a specialist
assessment, that she was violent.”
The family went to meet a different provider they had heard of. Fauzia now lives there. Shahana said,
“It seemed too good to be true. That’s the bit where we won the lottery.” But after agreement that
Fauzia could move, the process dragged out. The hospital didn’t seem to give Fauzia the transition
support she needed. For four months, the new provider went in to provide transition support for free.
But Fauzia did move. She got to choose the eventual moving date and that same afternoon,
she was out in her new community visiting the park. Shahana said, “The change in Fauzia was
profound and immediate.”
Earlier this year, Shahana and Fauzia were involved in a Dispatches documentary, ‘Under lock and
key’, telling her story. “It was quite a therapeutic process for Fauzia and the family. We knew she
was traumatised, but we perhaps didn’t address that and tried to move on instead,” Shahana said.
Despite being an ‘expert’ inpatient service, Shahana feels that the staff didn’t properly understand
Fauzia or her needs, and didn’t listen to her family. “The system is broken,” she told us. The culture
and attitudes need to change. “We need to commission better assessment and treatment units.”
When we first met Isabelle, six months later, a discharge plan for Matthew still hadn’t been
developed, despite promises that planning would start on admission. Isabelle had serious
concerns about Matthew’s health and wellbeing – he was losing weight and his anxiety was
increasing. Matthew was regularly being positioned face-down, prone restrained and injected with
anti-psychotic medication. Despite being an ‘autism-specialist’ service, staff were unable to adapt
their communication. Recommendations made at Matthew’s Care and Treatment Review (CTR)
were not followed. Meanwhile, he wasn’t getting education, fresh air or exercise. The whole family
felt powerless.
We next met Isabelle almost five months later: a lot had changed. Matthew had moved to a new
residential service with a 16-19 learning programme. His mental health section had been lifted.
Isabelle was much happier with the care he was getting: the environment was low arousal and
structured, restraint was not used, specialist mental health support was brought in and Matthew
was getting out and about with people. Isabelle was being involved in planning Matthew’s care and
was much happier with how his challenging behaviour was dealt with. She was hoping that a family
holiday in March 2017 would test the waters in terms of thinking about Matthew coming home.
When we met Isabelle for the final time, in April, Matthew was still at the residential service and
settled. Isabelle told us, “He’s in a home and not an institution, he’s out in the community several
times a day and the family can take him out whenever they want. So what needs to be done is
developing a long term plan for what life for Matthew looks like.” Matthew was no longer being
prescribed anti-psychotic medication and the next step would be a visit home.
Matthew’s care plan is a “living document and updated all the time.” It includes a positive
behaviour plan. “All his care is about motivating him and supporting him to learn skills.”
In March 2017, Matthew’s story was featured in an episode of Channel 4’s Dispatches
documentary series, ‘Under lock and key’.
At our first interview, David highlighted issues around information and advocacy. He had not been
given any information about the Mental Health Act when Stephen was sectioned and had to carry
out his own research. He told us, “It’s complex. I don’t really feel like I understand all the rights.”
Stephen didn’t have an advocate, and an appointed lawyer for a section review had not worked out
well, as Stephen finds new relationships and changes difficult. There also seemed to be no co-
ordination between different aspects of Stephen’s care, which left the family confused.
Stephen had a CTR in August 2016, but most of the actions hadn’t been acted on.
These issues were still ongoing when we met David for the second time. An advocate had been
appointed, but he didn’t make the reasonable adjustments that Stephen needed. David also told
us there wasn’t any specialist autism support on the ward anymore. The psychologist and speech
and language therapist Stephen was seeing had been told to stop seeing him. During this time,
Stephen’s challenging behaviour increased slightly and was not well-managed. David told us,
“There are strategies that work, but the ones they used are mental health ones that make things
worse.” However, a move to a step-down service, to gradually support Stephen’s move back into
the community had been proposed.
When we had our final visit, Stephen had made that move – although he was still under section.
This service was chosen because it had a set of pathways leading to community-based care.
It was more autism-specific than the last unit, but David was still not convinced it was right
for Stephen – the severity of some of the other residents’ needs was affecting Stephen, and
depressing him. Meanwhile, the community mental health provider did not have staff trained in
autism who could support him in the community.
The problems around the co-ordination of care persisted and input from Stephen’s home local
authority was a problem. David said, “Social services continually hold their hands back and let
health pay and organise it… no one is holding their hands up and saying ‘it’s my job’.” David
believes that until this lack of overall responsibility is addressed, no real progress towards bringing
Stephen back into the community can be made.
David also made a complaint about the advocacy provider in the last unit, but didn’t feel that it was
taken seriously. He was considering what steps to take next as it is vital support.
He said, “Stephen just falls between the gaps and no one takes ultimate responsibility for his
case… Where is the pressure to get Stephen back into the community?”
Common to several of the families we spoke to These stories also tell us that the quality of
was the feeling that they were “lucky” to get senior advocacy is as important as its independence.
people involved. For Shahana, it was attending Understanding the individual’s needs is key, as is
a meeting with the Minister for Community and the legal system. Autistic people and people with
Social Care at the time, Norman Lamb, arranged a learning disability may have particular needs
by a charity. That led him to visit Fauzia and then and communication may need to be adapted.
call a meeting with NHS England and all the senior For example, an individual may be unable to
commissioners. In Matthew’s case, his story got communicate verbally and require the use of sign
substantial media coverage and led to an online language, visual aids or a more creative approach
petition that gained hundreds of thousands of if they don’t use conventional communication.
signatures, leading to a meeting with the next Advocates need specific training to make sure
minister, Alistair Burt, and with NHS England. this happens. NHS England should write a
specific requirement into the Service Model to
However, this is clearly not an option for provide advocates who have received training
everyone, and neither Matthew nor Fauzia’s with the tools to make reasonable adjustments
families should have been in the position where specifically for people with a learning disability,
the only option was to get a minister involved to on the autism spectrum or both. This would
move things forward. According to NHS England improve both the supply and quality of advocacy.
guidance on Care and Treatment Reviews,17 a
responsible commissioner is tasked with putting Families also spoke to us about needing legal
together a meeting, and inviting attendees. advice to drive forward progress – especially
However, there is no guarantee that invitees the actions outlined in CTRs. This shouldn’t be
will attend. The Government and NHS England the case. But when it is, families need access
should strengthen the CTR process to ensure to lawyers who understand not only the legal
framework, but the needs of the individual.
NHS England (2017), Care and Treatment Reviews (CTRs): Policy and Guidance.
17
NHS England (2015), Supporting people with a learning disability and/or autism who display behaviour that challenges, including those
18
NHS England (2017), Care and Treatment Reviews (CTRs): Policy and Guidance.
19
For five months in 2014, Kamau was an inpatient in Doncaster, before moving to a low/medium
secure unit in Essex, where he remains.
Lorna worries about the use of medication. She said, “I am concerned that none of the drugs seem
to be beneficial to Kamau.” Over the interviews we carried out with Lorna, the lack of a behaviour
plan kept recurring. “I have raised my concerns with the psychiatrist and nurse at [the hospital]
many times and with all the staff there. I’ve raised my concerns with as many people as possible
and written letters, which the Challenging Behaviour Foundation has helped with. I’ve also raised
these issues with Kamau’s solicitor. There has been no outcome nor any response at all to my
concerns.”
Kamau’s physical health and wellbeing deteriorated too. “His skin is very bad and is completely
cracked on his feet. The last blood tests I knew the results for also said that his liver and kidneys
were being affected by the medication.” Over the year of our interviews, Lorna told us that she was
pushing for Kamau to see a nephrologist. This had just happened by our last conversation.
We also wrote to Kamau’s funding commissioners to raise issues around discharge planning and
the use of medication. When we last spoke with Lorna in March 2017, Kamau still didn’t have a
discharge plan, but they were starting to discuss it, “which wasn’t happening before.” A few days
earlier, Lorna had attended Kamau’s latest CTR. She said, “This time, it feels like if a place were
identified he could move out… I will need to push for him to leave. I am definitely dissatisfied. I’d
like to know the names of the places that are being considered and that the right experts are being
consulted. I also feel it is imperative that home is considered as one of those options.”
Following the March CTR a new psychiatrist has been employed and she has gradually withdrawn
lithium. Staff at the unit say they see no deterioration in Kamau since the withdrawal.
Lorna is concerned about the staff turnover. Kamau has had multiple psychiatrists over the past
two years and when we last spoke to Lorna, the most recent one had resigned. The psychologist
had also resigned, as had a number of the care staff. She is also worried that they don’t understand
autism. Lorna told us, “I don’t think the staff are used to dealing with people with autism, they’re
used to people with a mental health diagnosis. It doesn’t work with Kamau. If you shout at him, his
challenging behaviour will get worse because of the loud, negative way he’s being approached.”
Catherine is 21 years old, is on the autism spectrum and has a learning disability and obsessive
compulsive disorder (OCD), as well as some challenging behaviour. We first spoke to her aunt,
Anna, in September 2016. She described the situation that Catherine was in as “horrific”.
Catherine was 16 when she first entered inpatient care. She has remained in inpatient care since,
apart from one week where she lived in a community placement that broke down due to a lack of
adequate support.
When we first spoke to Anna, Catherine was an inpatient at a low secure unit where she had been
for about a year, having been at another Assessment and Treatment Unit (ATU) before. Anna told
us that the family had been given no choice but to accept the move to this unit. The family weren’t
able to see Catherine often and had serious concerns about the care she was receiving, which
they said was very restrictive. Anna told us, “she’s not getting any treatment, it’s just a holding pen
because staff [in the unit] don’t have the right skills, expertise or mindset. She’s getting nothing
while she’s there at all. Everything is about seclusion, never about trying to prevent incidents
happening in the first place.” Catherine’s health and wellbeing deteriorated and her aunt said,
“she’s now in a worse state than she’s ever been in the care system, it’s so bad her mum and dad
didn’t recognise their own daughter when they went to visit her”.
Catherine’s family spent months struggling to get her out of the unit. Concerns had been raised
repeatedly to safeguarding and commissioners but the family had to keep pushing. By the time we
spoke to Anna again, Catherine had moved to another inpatient unit which was medium secure.
It was closer to home and although it was still an inpatient unit, the family was happier with the
care and support Catherine was getting. “It’s so much better”, Anna said. At that point, there had
only been one instance of seclusion, but the family was phoned afterwards to explain why it had
happened and what had been learned for the future to try to prevent it from happening again.
The unit was also trying to improve Catherine’s diet. However, there had still been no Care and
Treatment Review and Anna was still having to chase it.
At our last interview, there still was no discharge plan, although some discussions had been
had about ‘stepping down’ to a low secure unit. The family still feel that Catherine’s needs “are
genuinely important to the staff at the unit.” They have established behaviour strategies. Anna
said, “They have identified trigger times, noise, when the light is changing, other people’s distress.
A mug of hot chocolate with marshmallows in and 1-1 with a member of staff works wonders.
Staff can actually be bothered to sit and talk to her, which is so different to before.” Catherine’s
medication has also reduced significantly and she has started a self-medication programme.
However, it is still a restrictive environment and Catherine’s family want to see her back in the
community, living a full life and “not spending the rest of her life in inpatient care.”
Aaron is a young man with a diagnosis of autism and a learning disability. He was first admitted
aged 18, in 2012. He was attending a specialist autism school with a view to starting a residential
school placement. Due to an administrative error with his date of birth, the family realised that
as he had reached 18, he would not be able to move into the residential placement. The family
hit crisis.
The local authority did not offer an alternative education placement. There was no transition
planning to adult services and Aaron only received support for 10 hours a week. Aaron’s behaviour
became increasingly challenging. In 2012, he was sectioned and after fifteen months in an
Assessment and Treatment Unit (ATU) he was moved to a specialist autism hospital.
His parents initially agreed to a short period of assessment in the ATU as they had become
exhausted due to the lack of support and hoped that Aaron would get the professional support he
needed. Jessica told us she was told “this would set him up for adult life.”
Unfortunately, Aaron had a traumatic experience in both the ATU and the specialist hospital. A
serious case review later found that these placements had “completely failed.” It further noted that,
“A very vulnerable young man suffered a sequence of traumatic experiences which may adversely
affect him for many years.” This included heavy reliance on restraint (including floor restraint)
despite the fact that Aaron had never been restrained previously. It also involved over-medication,
seclusion and a number of safeguarding incidents and injuries.
At the specialist hospital, professionals removed Aaron’s autism diagnosis without a proper
assessment. As a result, he was arrested for assaulting staff – following 11 hours of floor
restraint. Furthermore, he did not have access to an Independent Mental Health Advocate, and
an independent social worker was excluded from meetings by the provider after raising concerns
about the use of floor restraint. His anti-psychotic medication tripled in eight months. Jessica told
us, “Aaron was a heartbeat away from spending the rest of his life in an isolated ward in a high-
security hospital.”
That placement finally broke down and Aaron was transferred to a rehabilitation unit – restrained
in an ambulance by seven people, and having to wear a spit hood. Despite this bad start,
Jessica feels that the new unit “worked wonders” with Aaron. Within three weeks of moving,
his Haloperidol dosage had been reduced from 40mg a day to 9mg a day. A positive behaviour
strategy was also put into action. The unit reassessed Aaron and reinstated his diagnosis of severe
autism and a mild learning disability.
Jessica said that the fundamental difference in approach was simply kindness and empathy,
together with an understanding of autism and the trauma Aaron had experienced (he was
diagnosed with post-traumatic stress disorder, and the overmedication left him with difficulties
speaking, eating and walking). He hasn’t been floor restrained since. The family were listened to,
kept fully informed and described their relationship with staff as ‘exceptional’. Aaron was able to
access activities in the community, including a successful holiday and unaccompanied leave to see
his family.
Discharge was finally agreed in May 2015. Only now, two years later, is Aaron about to move into
his new house – five years after being admitted.
What these stories show Kamau’s experiences highlight the impact this
medication can have. His challenging behaviour
Some people with a learning disability, on became worse following medication, and Lorna
the autism spectrum or both who develop is extremely concerned about the effects it is
challenging behaviour or mental health problems having on his liver and kidneys. Another of the
require assessment and treatment. It is vital that families we spoke to (Eddie and Adele, later
they are able to access high quality care and in the report) told us that their relative was
safe treatment for their mental health needs. accidentally given an overdose when medication
However, the stories that we heard from families had been changed.
painted a mixed picture of how people have been
supported and the quality of the care they have Aaron’s story shows the positive outcomes
received. The effects are far reaching, affecting of relying less on medication and more on
the quality of life of individuals in units, delaying behavioural support. Within weeks of receiving
discharge further and presenting challenges once behavioural support, his medication dosage had
they are discharged. been reduced by more than three quarters.
20
Public Health England (2015), Prescribing of psychotropic drugs to people with learning disabilities and/or autism by general practitioners
in England.
NICE (2015), Challenging behaviour and learning disabilities: prevention and interventions for people with learning disabilities whose
21
www.england.nhs.uk/2016/06/over-medication-pledge.
23
Department of Health (2014), Positive and Proactive Care: reducing the need for restrictive interventions.
24
Michael is 24. He is on the autism spectrum, has a mild learning disability and can sometimes
exhibit challenging behaviour. When we first met Michael’s dad Roger, Michael had been in a low
secure inpatient unit under section 3 of the Mental Health Act for four months. Before that, he was
in a residential care home with eight other people, and supported on a loose one-to-one basis.
In the week before he was admitted to the inpatient unit, his anxiety increased. The community
psychiatric team were due to see him the following Monday. However, Michael’s challenging
behaviour escalated over the weekend.
Roger, and paramedics, visited the residential home and it was agreed that it would be safest for
Michael to stay there. But a few hours later he was taken to a place of safety in a mental health
hospital, and paramedics were called out again. After two days, he was transferred to an out
of area learning disability inpatient unit. Roger told us, “I don’t think that he should have been
sectioned at all. If it hadn’t been the weekend there may have been more support available and this
could have been prevented.”
During Michael’s time in the unit there had been one reduction in his medication, but otherwise he
was getting similar care and support to that which he received in the community. Roger said, “They
haven’t learned anything we didn’t already know. If they had listened to us, and understood his
needs better he wouldn’t be there”.
After three months at the unit, Michael had been cleared for discharge. However, only then did
discharge planning start – it had not started at the time of admission. When we spoke to Roger
for the second time, two Care and Treatment Reviews had been undertaken, but they hadn’t
amounted to anything. Roger felt they had been “a waste of time.” No action plans had resulted
from them.
The last time we spoke to Roger, Michael still hadn’t moved, despite having been cleared for
discharge for seven months. Although Michael had an advocate, Roger was not sure that she had
much input into his care or discharge planning. She had not been involved in finding a new home
for Michael, and was not part of a recent mental health tribunal.
However, a suitable placement had finally been found for him and a funding application was being
processed. Planning was still underway, but it was hoped that in his new home Michael would
have his own bedroom and lounge, and would be able to share communal spaces with four other
residents. The placement is walking distance from many activities Michael enjoys and is close to
his family.
The 17 months that Eddie spent in Northampton were an experience of “disappointing care and a
deteriorating doctor-patient relationship,” Adele told us. “Eddie was over-medicated and essentially
sedated,” received little education, fresh air or exercise while he was there. After lodging an official
complaint regarding suspected abuse, Adele was informed that “the relationship had become
untenable” and Eddie would have to move.
While Adele has been much happier with the care and support Eddie receives in Newcastle, the
distance from home has been a real struggle. She receives one funded visit per month, and once
arrived only to be told Eddie could not see her as it would be “unsafe” – Eddie was in seclusion
and had a seizure later that day.
During the summer, Adele launched an online petition that received over 65,000 signatures and
national media coverage.
At our first interview, Bristol commissioners were working with the family to draw up a plan for
support in the community. When we met for the second time in January 2017, Adele told us that
the hospital was very keen to involve Eddie’s family, and everyone hoped that he would be able
to move by June. Adele added that she believed the national media attention had “helped get it
moving forward”, and previous Care and Treatment Reviews had needed “a good deal of pushing”
to be acted on.
She also raised concerns about restraint use in the unit. Although it is recorded and monitored, she
was very unhappy that techniques such as prone restraint were still being used. A recent incident
had left Eddie with ligament damage.
When we met Adele for the final time in March, Adele told us there had been a couple more
worrying incidents. Eddie had accidentally been given an overdose when his medication had
changed, and had also been shoved by a member of staff. While Adele was told about both events
and they were properly investigated, these events should not have happened.
Eddie’s moving date had been pushed back, but everyone was still hopeful he would move by his
birthday in August. (We have since heard that this is unlikely.) Plans had developed, and funding
had been found to purchase a house. Adele was getting ready, along with commissioners and
Eddie’s social worker, to interview potential care providers. A month-long transition was also being
planned. Adele hoped that in the future, less restrictive measures would be used to manage her
son’s behaviour. She said, “Eddie is Eddie and no amount of medication is going to change that.
So we need to make sure he’s happy and well-supported in his community.”
NHS England (2017), Care and Treatment Reviews (CTRs): Policy and Guidance, p45.
25
National Audit Office (2017), Local support for people with a learning disability.
26
When we first met with Mark, his daughter Helen had been living in a small flat with two-to-one
support for a year. Her previous placement had broken down and she had been given notice.
The flat was supposed to be a temporary placement while a more suitable placement was found,
however no planning was taking place for the next move. Helen is autistic with mental health
problems and a borderline learning disability. But the family have been consistently refused help
by learning disability services because Helen’s IQ is just over 70. Mental health services also said
that Helen’s needs are not within their remit as she is autistic, although she does have other mental
health problems including extreme anxiety. Mark said, “these problems have worsened since her
teenage years, we’ve had constant battles. She’s gone from having a fruitful life to barely being
able to function at all.”
Mark had concerns that the flat wasn’t suitable and that the staff were not able to manage Helen’s
behaviour. Over the months, Mark pointed out that there was a substantial level of staff turnover
and that the staff seemed inexperienced. Helen was often left to her own devices. Mark said,
“They often sit in a separate room reading magazines, not engaging with Helen.” Mark has made
it clear that Helen needs to be constantly occupied but this hasn’t happened. Professionals and
a commissioner told Mark several times that Helen was at risk of being sectioned, but he and the
commissioner both felt that this wasn’t right for Helen and attempts were made to avoid it.
Although Helen was on medication that was prescribed by a psychiatrist several years earlier, there
had been no psychiatric input for some time. As a result, her medication wasn’t being reviewed.
When we next spoke to Mark, he told us that Helen had started doing some activities, but these
weren’t filling her days. It also took Mark a long time to get these set up for Helen. “She doesn’t
seem to have gone anywhere at all today,” he said. “I don’t think she’s done anything.”
When we last met Mark, Helen had moved again following a crisis situation. She had come within
hours of being sectioned, but an emergency placement had been found just in time to prevent
admission to a hospital hundreds of miles away. While Mark was pleased that an emergency
placement had been found, he was disappointed that the previous placement was allowed to get
to crisis stage, particularly as he had raised concerns many times.
The other residents in the new placement were different ages to Helen and had very different
needs. However, Mark did feel that the staff at the home were more capable, and Helen initially
seemed to be doing well. However, just a few weeks in, Mark was concerned about Helen’s
mental health and increased challenging behaviour, and about whether the placement could meet
Helen was still waiting for input from a psychiatrist, occupational therapist and speech and
language therapist. Mark said, “I’m really worried she’ll be sectioned still. I have been clear from
the start that it wasn’t just about moving her to the right place, she’ll need support for her mental
health too.”
It has been recommended that Mark seeks a Care and Treatment Review, as Helen is still at risk
of admission. However, in the past the commissioner has been reluctant to carry out a CTR. Mark
said, “If she ends up in one of these places [an ATU] it’ll just destroy her. But I’m worried I can’t
keep her out.”
When we first met Karen, Rebecca had been discharged from a general adolescent psychiatric unit
about six months earlier. Rebecca is autistic and has mental health problems, but does not have a
learning disability.
Karen told us that one of the reasons she had agreed to Rebecca being sectioned in February 2016
was the prospect of being guaranteed care and support after she was discharged. At that time,
Rebecca had clinical depression and was suicidal. Karen was told that Rebecca would need to
stay in the unit for two weeks. She stayed for over two months.
The unit was not appropriate for Rebecca. She struggled being so far from home and was
restrained and sedated. She was on high levels of medication, which were questioned by the local
Child and Adolescent Mental Health Services (CAMHS) team when they visited. Karen told us that
the unit “did not cope with the behaviour of an autistic person, for example due to dealing with
change or the environment.”
Rebecca left the unit in April, by which point she had grown dependent on diazepam. Karen was
also worried that Rebecca was showing signs of post-traumatic stress, in the form of difficulty
sleeping and waking screaming in the night. Her discharge came about as she was approaching
18, and was no longer able to stay in the adolescent unit. Issues around transition to adult services
persisted when Rebecca was discharged.
After the discharge plan was drawn up, Karen told us it took months for the council and the CCG
to organise support, and there was nothing in place for those months. Karen had to fight to get
funding for art therapy – which really seemed to work and was recommended as part of Rebecca’s
aftercare. When we met the second time, Karen told us that the CCG had tried to stop funding it.
Only an intervention from her, the therapist, the local autism lead, an MP and The National Autistic
Society meant that the funding was continued until at least October 2017.
Rebecca has only seen a psychiatrist once since being discharged. Karen told us that assessments
for care and support resulted in direct payments that didn’t cover the full cost of support. Karen
Despite the fact that she has been sectioned, and being (as Karen strongly believes) at risk of future
admission, Rebecca does not have a social worker. This is because she does not have a learning
disability and the community mental health team are not getting involved.
Karen told us she feels let down. The detrimental impact of Rebecca’s time in the unit continues,
and the family live without the support they need.
NICE (2015), Challenging behaviour and learning disabilities: prevention and interventions for people with learning disabilities whose
27
behaviour challenges.
Care Quality Commission (2017), Brief guide: Positive behaviour support for people with behaviours that challenge.
28
NHS Digital (April 2017), Assuring Transformation: Learning Disability Services Monthly Statistics. Accessed 1 June 2017.
29
Department of Health (2015), Statutory guidance implementing the adult autism strategy.
30
6. The Department of Health should strengthen 2. In line with the National Audit Office’s
the rights of individuals and families to recommendation,31 NHS England
challenge decisions made about the use of should develop measures to assess the
medication by issuing statutory guidance. effectiveness of community capacity to
prevent admissions. It should then make
7. The Department of Health should strengthen
sure commissioners use these measures
guidance on restraint and seclusion to
locally and nationally to ensure good quality
increase family involvement.
housing supply.
National Audit Office (2017), Local support for people with a learning disability.
31
TCP Transforming Care Partnerships are groups of CCGs and local authorities, combined
with NHS England who work together to plan services for people with a learning
disability, on the autism spectrum or both.
ATU Assessment and treatment units are inpatient units for people who have a learning
disability and need intensive support. They are supposed to be short term services.
CQC Care Quality Commission oversees the quality of health and social care services
in England.
CTR Care and treatment reviews are meetings that bring together individuals, families’
commissioners, professionals and an expert by experience to check if someone’s
care is right. They can also agree on actions for discharge.
MHA Mental Health Act governs when someone can be sectioned and their rights if
this happens.
EHCP Education, Health and Care Plans (formerly ‘statements of special educational
needs’) document the support that a child with special educational needs requires.
CPA Care Programme Approach is a way of planning and reviewing services for people
with complex needs, including some people with a learning disability.
JSNA Joint Strategic Needs Assessments collect information about the health and care
needs of a local authority’s population. Local authorities then use this information to
plan the services they need.
Based on our experience, and with support from our members, donors and volunteers, we provide
life-changing information and advice to millions of autistic people, their families and friends. And we
support professionals, politicians and the public to understand autism better so that more autistic
people of all ages can be understood, supported and appreciated for who they are.
The National Autistic Society is a charity registered in England and Wales (269425) and in Scotland (SC039427) and a company limited by
guarantee registered in England (No.1205298), registered office 393 City Road, London EC1V 1NG. 3531 140917