Recommendation 3 (community teams and crisis support)
In our Out of sight report in 2020 we highlighted the importance of the right community care being in place to enable people, their families and those that support them to be able to get their needs met by appropriately skilled community teams across health and social care. Additionally, this also included access to crisis support and respite services.
This was because we heard from people that they were not able to access the right support at the right time from staff or services who understood their needs. This could contribute to them being admitted to hospital, and then could stop them from being discharged.
We called for all staff in community teams to receive training to help them support autistic people. This was not just for specialist teams but all teams, such as child and adolescent mental health teams (CAMHS), eating disorder teams, forensic teams and community mental health teams.
To ensure that there is adequate support in the community we made several recommendations to improve people’s access to person-centred services.
If recommendation 3 was fully implemented:
- autistic people would be supported by staff in all types of community teams who understand their needs. This includes community mental health, CAMHS, forensic and eating disorder teams
- people would be supported by community teams to avoid crisis
- people experiencing crisis would be supported by community teams and support centres who have enough staff with the right skills to give individualised support to prevent them being admitted to hospital
- everyone supported by community teams could receive trauma-informed care
- people would be supported through transition periods, such as discharge from hospital or crisis teams or from childhood to adulthood
- people could access respite care that meets their needs and is close to home
- people with a learning disability and autistic people would be identified where there are risks of family or placement breakdown because each area has a local Dynamic Support Register. People on the register would receive more support from health and social care community teams to prevent them being admitted to hospital.
Has recommendation 3 been achieved?
We consider that recommendation 3 has not been achieved
There has been significant investment in improving community support. However, as the NHS Long Term Plan is to 2024, it is too early to see the impact.
Action needed:
- The number and quality of community teams must be further developed to prevent hospital admission.
- Autistic people must be able to access community support adapted for them, including crisis support where staff have the relevant skills and knowledge.
- As stated in the autism strategy for 2021 to 2026, people must be able to access a timely diagnosis of autism in line with NICE guidelines.
What we have been seeing and hearing
Our recommendations called for the development of community resources to ensure that people could be supported in the community and therefore avoid hospital admission. Far from an improvement, we have seen that people have found accessing community mental health support more difficult.
This is partly due to the impact of COVID-19. The pandemic has led to a mental health crisis in a system that was already overloaded.
New urgent referrals to crisis care teams fluctuate monthly but are increasing. The monthly average of new referrals to urgent mental health services in MHSDS data currently available for 2021 (January to October 2021) is 10% higher than the monthly average for 2019 and 4% higher than the monthly average for 2020 (figure 3).
While the 2021 community mental health survey found that there had been a small increase in the proportion of people who would know how to contact crisis services outside of normal office hours, one-fifth (20%) said the last time they tried to access these services they were not able to get the help they needed.
The pandemic has had an impact on how people have been able to access community mental health support. The survey reported that:
“In response to social distancing measures, many services moved away from in-person care and offered remote care via telephone and video conferencing. Our analysis shows that people who received telephone-based care reported worse than average experiences in four key themes: overall experience, access, communication, and respect and dignity.”
The change away from face-to-face appointments has obvious implications for people with mental ill health, autistic people, and people with a learning disability. They may be disadvantaged, or even excluded, because they do not have the right technology or know how to use it without support, or they may lack the communication skills to be able to truly reflect their feelings and situation online or on the telephone.
A missed phone call from a healthcare professional can also mean that a person has not engaged and there is a risk they are discharged from the service.
Feedback from 12 senior managers in health and social care roles across eight local authority areas highlighted the need for further resources for crisis support. It was commonly reported that resources for crisis support in the community had only increased a little, while some felt there had been no change or that the situation was now worse due to the pressures of COVID-19.
Members of our Expert Advisory Group, which includes people with lived experience, told us of community crisis cafés and similar resources being shut down due to COVID-19 and not being reopened.
Scarlet’s story of community support
My name is Scarlet and I have bipolar. Before I went into hospital, I was trying to get hold of the crisis team to prevent me from being admitted. If you have bipolar and other mental health conditions, you take comfort in routine, but I couldn’t get my head around COVID-19.
I was trying to get help, but it seemed like there was nobody there. They could have been monitoring me more closely, like asking how I was sleeping. No-one came out to see me because of the pandemic, and the whole situation sent me off the rails.
I had a consultant phone call the day before I was admitted to hospital. On the letter I received it said I would be reviewed in two months’ time, but if he had seen me in person, he would have seen I wasn’t very well.
At the end of 2020, I transitioned to community services from hospital, but I felt like no-one spoke about the trauma caused by being an inpatient.
I had telephone meetings with the consultant and telephone meetings every three weeks with a community psychiatric nurse (CPN). They didn’t consider me as a whole person. The CPN only asked about medication rather than looking at other factors, like if you are not exercising or not sleeping well or advising on psychology services. If you say you are low in mood, they will try to up your medication, so I’d avoid telling them.
I recently had a three-way phone call between my consultant, my nurse and me, and that was helpful because there are a lot of conversations and decisions about you but without you. Opening that up makes you feel more confident and more involved.
I’m going to ask about having an occupational therapist. When I’ve had one before, it felt like they were taking my needs into consideration rather than being so clinical.
I’m doing a lot better now, and I still have to really work on self-care and closely monitor myself.
Trauma-informed care
Understanding previous trauma and how this effects people is essential for providing the right care and treatment. People with mental ill health, autistic people and people with a learning disability are more likely to have experienced trauma. Trauma-informed care seeks to understand and respond to the impact of trauma on people’s lives. Baroness Hollins reflected on the importance of trauma-informed care to the Secretary of State.
Trauma-informed approaches are not embedded across health and social care services. As highlighted in Scarlet’s story, the impact of trauma following a hospital admission for people with a learning disability or autistic people is not commonly talked about and needs to be discussed following hospital admission.
Respite care
We have heard of some respite services closing or, during COVID-19, these have become harder to access. This has been putting additional pressure on people and their families. Some support services that help keep people well have not fully re-opened.
NHSE/I have told us:
- In 2020/21, as a response to the pandemic and winter pressures, local systems received £2.3 million to fund community respite care for autistic children and young people and people with a learning disability who have been identified as at risk of admission or mental health crisis. The funding saw a real benefit in reducing avoidable hospital admissions.
- In 2021/22, as part of the government Spending Review’s COVID-19 response, local areas were allocated £3 million to continue their work with local partners to develop respite care that prevents children and young people escalating into crisis. This work has included personalised short breaks and the use of personal health budgets.
Transition
We have heard from our stakeholders that there is often a lack of forward planning so young people, and their families often don’t experience a planned transition from children to adults’ services.
Adam’s story below shows how this can happen and the importance of good transition planning and the obstacles that can get in the way.
Adam and his family’s experiences of transitioning to adult services
Adam is autistic, has a learning disability and a mental health condition.
Trying to bring in adult services so that they are already aware of Adam is almost impossible, as they do not want to be involved until he is 18.
However, when planning ‘a home for life’, adult services should at least have some involvement to ensure the correct processes will be in place for a smooth transition, but this seems to be a brick wall. They want to take over at 18 and then all the services will be re-assessed.
It is possible for people to experience positive support in the community that meets their needs, which makes all the difference to people’s outcomes.
Ravikah’s story of community support
I’ve been in and out of healthcare services for most of my life, having mental ill health, as well as suffering with issues around substance misuse and alcohol problems.
In January 2019 I suffered serious assault and injury and I spent a lot of that year in hospital. After that, I was stuck in my house, alone, suffering with post-traumatic stress disorder (PTSD) and terrible depression and anxiety. Then we were hit with a global pandemic. So what help was I getting?
I can honestly say that for one of the first times in my life that the mental health services were absolutely amazing. I was in need of specialist therapy for PTSD, which was organised via Zoom once a week, and my community psychiatric nurse (CPN) also called each week, which really helped me feel cared for and not so alone.
Finally, my PTSD was beginning to fade but, because of the fear of COVID-19, I started suffering panic attacks and anxiety that were so horrific I couldn’t even contact my GP.
This is when my CPN was brilliant. She recognised that I was being triggered and had started to self-medicate with substances. She referred me to the right services who helped me realise that I needed to go back into therapy – which is working wonders right now.
For me, it’s as though mental health services really stepped up throughout the pandemic, and for that I feel blessed and fortunate, thank you.
Support for autistic people
Autistic people are often not able to access the right support due to a lack of specific services or skilled staff to meet their needs. In particular, women and girls can be misdiagnosed with other conditions such as Emotionally Unstable Personality Disorder or can first present to services with an eating disorder.
Experimental data from NHS Digital on waiting times for autism diagnoses between April 2019 and June 2021 suggests that the number of new referrals for suspected autism is increasing. The proportion of new referrals for suspected autism in each quarter that were still waiting for an assessment of autism or any contact also seems to have been increasing. The data suggests that at the end of September 2021, over half (54%) of the new referrals made between April and June 2021 were still waiting for an assessment or any contact.
Delay in autism diagnosis has a huge impact on people who are in crisis and may be in danger of being admitted to hospital, as they are not able to access Care (Education) and Treatment Reviews.
Meena’s story of getting an autism diagnosis
I spent two years on an NHS waiting list for autism diagnosis but was then removed because I moved out of the area. I had the option to go back on the waiting list under a new service but would likely have waited another two years.
I ended up paying for my assessment privately and was diagnosed at the age of 27 with autism, ADHD (attention deficit hyperactivity disorder) and central auditory processing disorder. This is, of course, something that not everyone is able to do, but I was fortunate.
I found the NHS process very challenging. Waiting lists are incredibly long and autism in females is very poorly understood, even among some professionals. For example, one GP actually said to me a few years back that I couldn’t possibly be autistic because I am a woman with a partner and a job!
For this report we reviewed 21 inspection reports of services for children and young people with special educational needs and disability, which were published between October 2020 and November 2021. This review found that young people and their families often experience long waiting times for an assessment for autism. One inspection report described how children under the age of seven could be waiting over two years for an assessment.
The autism strategy for 2021 to 2026 acknowledges the importance of early diagnosis of autism for children, and that all too often children struggle to get the support needed following the diagnosis.
Mark’s story of trying to get an autism assessment
It was only when lockdown started, and I didn’t need to be around people as much, that I realised how much emotional effort I was putting into masking, and how accepting I was probably autistic would really help me.
My wife had been diagnosed in early 2019. This had been hugely beneficial to her wellbeing, so I booked an appointment with the same GP she had seen. A different GP contacted me, and after some questions decided to refer me and advised me that I would be assessed in the practice in six weeks, which seemed surprisingly quick.
I was later called back to be told I would be seen somewhere else, and the waiting time would be at least 12 months, possibly longer because of COVID-19.
So far, I have waited 18 months and I have had no further contact in that time.
I’ve thought about contacting the service to ask about waiting times, but I hate using the phone and I panic they’ll not find my referral and I’ll have to start all over again. The waiting times are bad, but it would at least be better if you were kept informed of how long the waiting time is.
Sometimes autistic people are told that they do not meet the criteria to access services.
Rebecca’s story about community support
I am autistic and have an eating disorder. I was doing well with my recovery when the pandemic hit. Overnight everything changed. The level of anxiety I was experiencing was off the scale.
I reached out for help repeatedly and kept being denied care – often my autism/complex needs were given as a reason to decline potential care options. I personally don’t feel that my needs are that complex; if I have a clear plan, routine and my sensory needs are understood I can cope quite well in unfamiliar environments.
The Crisis team concluded I wasn’t severely depressed; I don’t feel they fully understood how depression may present in someone that is autistic. I had a Care and Treatment review that agreed that a short, planned admission to a rehab hospital could help me to get back on track. At the point I was told that the Crisis team denied the recommendation from the CTR, I attempted to end my life.
The National Autistic’s Society’s report, Left stranded highlights the increased difficulties faced during the pandemic. The community respite care funding highlighted above, to support children and young people during the pandemic, was not made available for autistic children waiting for a diagnosis.
While some progress has been made by the publication of the government’s National strategy for autistic children, young people and adults: 2021 to 2026 and investments in the NHS Long Term Plan, we hear from people and their families that those who are autistic without a learning disability feel hidden from services. It is often difficult to access the right support as staff do not have the right skills and knowledge and therefore do not know how to ensure that the right reasonable adjustments are made. This leads to autistic people facing huge health inequalities when trying to access both mental and physical healthcare.
Account from an investigation and inquest into the death of an autistic boy – concerns about his care
In January 2020, a 14-year-old autistic boy who suffered from anxiety died as a result of suicide.
During the inquest, the coroner raised a number of concerns around staff knowledge and training. The coroner reported that the inquest “revealed a widespread lack of knowledge and understanding of autism”, including co-morbid mental health conditions, self-harm, suicidal thoughts, and how to communicate with an autistic child.
There were also concerns that, due to a lack of understanding around roles and obligations, staff did not correctly record the risk of self-harm and suicide in the boy’s Education, Health and Care Plan, and that there continues to be a lack of understanding among clinicians in this process.
The coroner reported a lack of training across all state agencies, and an absence of comprehensive, relevant, and mandatory training. The coroner said that this raises an ongoing risk to autistic children and their ability to access the services they require for their support, welfare, and safeguarding.
The coroner also raised several concerns about the boy’s care. For example, despite a number of referrals to child and mental health services, a clinical assessment was never received. The coroner raised concerns that ‘routine’ referrals are automatically classed as low risk, but there are children in this category who face considerable waiting times, and a high-risk of harm, which is unrecognised and unmanaged.
It was found that the referral made to children’s services two months before the boy’s death failed to appreciate the seriousness of the risks, and failure to allocate his case appropriately contributed to his death.
Source: Courts and Tribunals Judiciary, published February 2022
NHS England and NHS Improvement
NHS England and NHS Improvement (NHSE/I) have told us they are investing in community support for people with mental ill health and a learning disability and autistic people. Several projects aim to increase community support, and therefore prevent people from going into crisis and needing hospital admission. These are part of the NHS Mental Health Implementation Plan, which is until 2024 and therefore it is too early to report on impact.
In total, NHSE/I is investing £2.3 billion additional funding in mental health services by 2023/24. This seeks to shift the balance of care, with the large majority of new investment going into community mental health services for children and adults – areas that have historically had very significant under-investment.
Adult crisis and community mental health
Some of the investment includes:
- nearly £1 billion additional funding for new models of integrated primary and community services for adults with serious mental illness
- around £300 million in enhancing adult mental health crisis services, including a range of alternative crisis services in every part of the country
- all mental health crisis services will be ‘open access’, via 24-hour urgent mental health helplines by 2024. This means that anyone can self-refer and there should be no exclusions. NHSE/I will share guidance on making reasonable adjustments for people with a learning disability and autistic people calling these lines
- ring-fenced investment in models such as crisis houses, sanctuaries, and crisis cafes in all parts of the country.
There is an ambition to end the practice of admitting people out of area for adult acute mental health care. While this has been challenging, especially during the pandemic, it remains a priority nationally and for all local areas.
Children and young people’s mental health services
There is nearly £1 billion of additional funding for children and young people’s community, crisis and schools services:
- crisis services are ahead of schedule, with 67% of the country currently having full or partial coverage of the four key components of a comprehensive crisis service. This is against a public commitment of 35%
- NHSE/I allocated £3.5 million of the 2021/22 Spending Review funding from Government to support earlier identification of children and young people at risk of admission to inpatient care and to avoid crisis point. The Spending Review funding was allocated for just one year and stops in March 2022
- guidance and training for community services aims to improve access, assessment and treatment for children presenting with avoidant restrictive food intake disorder (ARFID). This condition may be more likely to occur in autistic children and young people, those who have ADHD (attention deficit hyperactivity disorder) or a learning disability
- in May 2021, the national children and young people’s Transformation and Mental Health Programme teams launched a joint project on improving integration between children and young people mental health services and acute trusts.
Dynamic support register
Local clinical commissioning groups or integrated care systems are expected to develop and maintain registers to identify people with a learning disability and autistic people, who may be at risk of being admitted to hospital. These registers should ensure that local health and social care services have good knowledge about people’s needs and that people are given the right support to live well in the community and to help prevent a crisis that might lead to them being admitted to hospital. Guidance about dynamic support registers is included in NHSE/I’s Care (Education) and Treatment policy.
The use of dynamic support registers varies in areas and will have an impact on their role in preventing admission. Where they work well, all system partners are part of the conversation with families and people and the solutions are delivered.
To promote consistency, NHSE/I are developing guidance to support the implementation of the dynamic support register.
Keyworker scheme
Children and young people with a learning disability and autistic children in inpatient units or at risk of admission will have a keyworker to make sure they and their families get the right support at the right time. They will ensure local systems are responsive to meeting the young person’s needs in a joined-up way and, whenever possible, to providing care and treatment in the community with the right support. This has been piloted in 13 areas with 14 others having adopted the system so that 27 local areas now have a keyworker programme. Development of keyworking services in the remaining integrated care systems will happen in 2022/23.
Recommendation 9 (reporting of data)
Getting a diagnosis of autism was a key concern in our Out of sight report, with people and families often waiting for a long time to get one. A diagnosis can help people understand how they see the world around them, so getting one as quickly as possible is important. It should also mean they can get the right support when they need it from community teams that understand their needs.
The government’s autism strategy highlights that people are often waiting far too long for an autism assessment. National Institute for Health and Care Excellence (NICE) guidelines recommend that people should not be waiting for more than 13 weeks from referral to diagnosis.
In recommendation 9 we called for all local authorities and clinical commissioning groups to have to report on the data regarding the number of autism diagnostic assessments they are completing for adults and children.
We also asked for the number of people with a learning disability and autistic people who were admitted to hospital to be reported and broken down by each local authority and clinical commissioning group.
If recommendation 9 was fully implemented:
- people should wait less time for an assessment of autism because local areas would have better oversight through the data reported, highlighting areas that need to improve
- each local area would report on the number of people with a learning disability and autistic people admitted to hospital.
Has recommendation 9 been achieved?
We consider that recommendation 9 has been partly achieved
As stated in the autism strategy, accurate data is needed to be able to monitor and improve the current waiting times. Data is in place but needs further improvements to give an accurate reflection. The data available shows that waiting times for an assessment for autism are still far too long.
Action needed:
- As stated in the autism strategy for 2021 to 2026, people must be able to access a timely diagnosis of autism in line with NICE guidelines.
- The data available needs to reflect referrals, assessments and waiting times for children and young people.
What we are seeing and hearing
As reflected in the chapter above, people are still waiting too long to receive an autism diagnosis.
In July 2021, the government’s new National Strategy for autistic children, young people and adults was published. This states that there have been significant improvements in autism reporting, including the introduction of the autism diagnosis waiting times data. This data is reported at national, clinical commissioning group and provider level. This is still seen as experimental data and is constantly being reviewed. Currently, the data relates largely to adults, as most referrals and assessments for children fall outside of the scope of the NHS Digital collection.
The autism strategy sets out how the government will develop an action plan to improve data collection. The government has committed £13 million to begin reducing waiting times for children, young people and adults. This includes the backlog created by the pandemic. This is a welcome investment. However, as we can see from the previous chapter, this is yet to have significant impact.
Commissioners report monthly on the number of people with a learning disability and autistic people who are admitted to inpatient units through the Assuring Transformation data. This data is reported at national, integrated care system, transformation care partnership, clinical commissioning group and provider level. This helps to build up a regional picture of how many people are being admitted to inpatient units.