Here are the things that the advisory group has been helping us with and what we’re doing about them:
- Going to the GP
- NHS 111
- Dynamic support systems
- Autism diagnosis
- Coronavirus and lockdown
- Allied Health Professionals
- Community crisis support
- Research and innovation
- Restrictive practice
- Social prescribing and primary care networks
- Learning from deaths
- Focus on autism 3
- Ask Listen Do- feedback and complaints
- What’s important to you
- NHS.uk website
- Experience of GP services- the quality and outcomes framework
- Quality Checkers
- Personalisation 2
- Transforming Care evaluation
- Always Events
Access to health services has changed a lot because of the coronavirus pandemic.
We talked about improving your family doctor (GP) services for people with a learning disability and autistic people. This is a called a review of GP services.
- Some things in GP services have worked OK during the coronavirus pandemic. Some things need to improve-
- Make reasonable adjustments to support people to see the doctor, and make sure people know they can ask for any reasonable adjustments they need if they are disabled.
- Record people’s reasonable adjustments on the computer, so you can remember each time.
- Make information simpler to understand- and in the right format.
- Help people prepare for appointments. Pictures of staff and the building (outside and inside) would help.
- Make the building easier to be in- more relaxing. Many people need a quiet space with good lighting. A better sensory environment.
- Longer opening hours has helped people to have appointments at quieter times such as on Saturdays or in the evenings.
- All staff should be trained on working with people with a learning disability and with autistic people (and know the two are different).
- Make it easier for people with a learning disability to get on the list of people with a learning disability at their GP surgery- this is called the learning disability register.
- Start an autism register, to help autistic people get the right support.
- GPs need to communicate better with other NHS services, such as other GPs and with hospitals and dentists.
- Make sure all people who are due an Annual Health Check are invited by their GP surgery and have them in person where possible- to do all the checks and to listen well to people.
- Tell people about the services they can get at their GP, and which ones they don’t offer any more.
- Help people understand when they should go to the GP e.g. noticing changes in their body, if they have been feeling unwell for a while.
- Making sure people can see their GP when they need to- with different ways to get in touch – phone calls can be really difficult for some people. Ask people how they prefer to be contacted e.g. via text, letter or online.
- Listen to autistic people, people with a learning disability and family carers in each area to see how to improve services. You could help people to join the patient participation group.
- We are using this advice to shape a big review of GP services. This will support making them more accessible in the future.
- We are supporting GP practices to carry out Annual Health Checks for people with a learning disability and working to make the quality of the checks better.
- We are giving practical advice to GP practices, for example helping them to understand reasonable adjustments and how to make them.
We talked about using NHS 111 – either online or on the phone.
- There needs to be a different way to access NHS 111 – for example video calls. This could include having a sign language interpreter.
- There should be an option to speak to a real person straight away on the phone.
- Call handlers should have learning disability and autism awareness training – including training in sensory differences and how to communicate simply.
- The NHS 111 website could be made more accessible, for example by –
- using images
- having a free textbox as well as a dropdown list for recording symptoms
- more support for checking your symptoms – for example having a body map where you can click the place where you have pain.
- There should be more accessible information about NHS 111 – so people know what it is and when to use it, including NHS 111 online.
- We have shared what you told us about 111 with the NHS 111 team.
- The NHS 111 team are using what you told us to look at improving accessibility and making reasonable adjustments for people with a learning disability and autistic people.
- The NHS pathways team have created additional learning disability and autism training material which will become a mandatory part of core training for all 111 call handlers.
The Advisory Group talked about how we make sure that people who are most at risk of going into a mental health hospital get the support they need to stay at home. Every local area should have a way to do this. This is called a dynamic support system. Part of having a dynamic support system is having a list of people who are likely to end up in crisis and in hospital if they don’t get the right support. This list is sometimes called a dynamic support register.
- There needs to be lots of different ways of accessing dynamic support – like being able to refer yourself, or through a social worker or GP.
- There needs to be the right support available for parts of the NHS and other places where people get support, to make sure dynamic support systems work. This includes mental health services.
- Dynamic support systems need to act early to prevent people from reaching crisis.
- There is concern about dynamic support systems because lots of people don’t trust mental health services or are scared of being ‘on a list’.
- There are some rules for how dynamic support systems work. These should be the same in each area. They need to be accessible and about people, not about systems.
- What the advisory group told the dynamic support systems team has helped them understand how people should get on a dynamic support register and get the support they need. For example, they are making sure that –
- people can refer themselves for dynamic support
- health, social care and education work together so that there are lots of different ways to get on the dynamic support register.
- They are using the advice to develop guidance. There will be guidance for the NHS and other places where people get support. There will also be guides for people and families to help everyone understand dynamic support. These will be published later in 2021.
- The dynamic support system team are working with commissioners (people who pay for services) to make sure that people get support early and in a way that is right for them, including through training.
- They are also using real life examples to show and reassure people of how being on a dynamic support register can help people stay well and get the right support close to home.
- They have set up a group of people with lived experience to help develop this work more and make sure the rules for dynamic support systems are about people and are accessible.
We asked the group about what makes getting diagnosed as autistic difficult, what we can do to overcome some of the barriers, and what support people need. We also talked about having appointments during coronavirus, both online and face-to-face.
- Make it easier for children and young people to be referred to autism services. It shouldn’t rely only on school involvement.
- Transition to adult services is hard.
- People need to know what to expect from autism services – good communication. Consistency would help.
- People need information and support throughout the waiting and assessment process, as well as afterwards. This should include peer support and user-led groups.
- Online appointments have been good for some people. Other people have found them hard.
- People said there needs to be better preparation for face-to-face appointments. Most people said there has not been enough support or communication during the pandemic.
- We are helping the people who pay for services (called commissioners) to plan their diagnosis and support services.
- We have set up the next advisory group meeting to look at how people at risk of crisis can be “flagged” early in life for support – dynamic support systems.
We asked the group about lockdown, and their hopes and worries about the future.
- There has not been enough clear, accessible information about coronavirus, particularly for people who are shielding.
- Coronavirus means that some people with a learning disability and autistic people have not been able to access usual health services – including mental health support.
- Data about how coronavirus is affecting people with a learning disability and autistic people (including data about people with a learning disability who have died from coronavirus) is being published too slowly.
- Online meetings and virtual appointments have been more accessible for some people. However, not everyone has access to technology, which means some people have been left out.
- What the Advisory Group told us was shared with the people in the NHS who are looking at people’s experiences of coronavirus and lockdown. This work is about making sure that the people most affected are listened to.
- We have used what the advisory group said, together with what 13 other focus groups and two Facebook surveys said, to make a report which has now been sent to the government to inform planning.
We talked about Allied Health Professionals and how they can help make sure people get the right support at the right time.
- Allied Health Professionals need to get to know people and plan care around each person as an individual – for example by making reasonable adjustments.
- It should be easier for people to get direct help from Allied Health Professionals, without having to go through a GP (family doctor).
- We need to make sure that people know about Allied Health Professionals – for example through more accessible information.
- Allied Health Professionals need to communicate well with each other and with other health, social care and education services.
- Allied Health Professionals need a good understanding of autistic people and people with a learning disability.
- What the advisory group told us is being used to decide what needs to go into the new Allied Health Professionals strategy (the plan for how Allied Health Professionals will work over the next 5 years).
- It is being used to help understand what things might get in the way of people getting help from Allied Health Professionals.
- The Allied Health Professionals team are also using the advisory group’s feedback to involve other people in the work they are doing.
We talked about what things can lead to a crisis, who people would call in a crisis and what support is missing for people who are in crisis
- Lots of things can cause a crisis, including changes in routine, problems at home, work, school and college, and problems with health and health services.
- There are lots of people you could call in a crisis, including friends, mental health services and charities.
- But there is not enough support available – there is not enough mental health support, there isn’t enough support when people leave hospital, and there isn’t enough support for carers.
- It can be hard to get the services you need – there’s not enough information on what support is available, and there are big differences across the country.
- We have shared what you told us with the children and young people’s team and the strategic commissioning team. Strategic commissioning is about helping the NHS to plan and pay for care and support that is right for people and helps them live their life well.
- The children and young people’s team are using what you told us to help local areas to develop community crisis support.
The Advisory Group looked at what research and innovation (‘doing new and better things’) would be most useful for autistic people and people with a learning disability.
The areas of research and innovation that were most important for the Advisory Group –
- Looking at annual health checks and making them work well
- Finding the best things other than medicines to help people stay well
- Finding good healthcare close to people’s homes that can be repeated in other areas or on a bigger scale
- Involving autistic people and people with a learning disability in clinical trials
- Looking at good staff training that includes useful information about learning disability, autism and equal rights
- Autism diagnosis and post-diagnostic support.
The things that you told us were combined with what the research and innovation team heard from other groups. The final priorities they came up with were –
- Looking at annual health checks and making them work well
- Finding the best things other than medicines to help people stay well
- Finding good healthcare close to people’s homes that can be repeated in other areas or on a bigger scale
- How do we improve the quality of data about the health of people with a learning disability and autistic people?
- What are the best ways of preventing illnesses that people with a learning disability and autistic people often get?
- Measuring improvements to quality of life in a person-centred way – to help test new ways of working.
- We have shared what the group says with our senior managers to shape research and innovations in the future.
- The group will be invited to another workshop in early 2021 with researchers and policy makers to keep shaping the research that we ask for. This has been delayed due to coronavirus.
- We are making guidance about involving people in research. There will be a section on involving people with a learning disability and autistic people.
- We have shared the detail of what the group said was important with the National Institute for Health Research (NIHR), an organisation that pays for research.
- We are looking at research outside of NHS.
- We are sharing what the group told us with people working in the Mental Health Programme and the new Autism Programme.
Restrictive practice is used to stop people from doing something that is a danger to themselves or other people.
It should only be use if nothing else has worked – as a last resort.
It should only be used where there is a real chance of harm.
We asked the group how we can help reduce the use of restrictive practice for people with a learning disability and autistic people.
- People must be involved in shaping the support they get. Getting things right for people reduces the need for restrictive practices. Where appropriate, families need to be involved too. Make a plan with people, families and an advocate.
- People need to know their rights and how to get the right support.
- If restrictive practice does happen, people and families should know why it has happened and they need to know how to raise a concern or make a complaint.
- Training is important. There needs to be information for staff about how to avoid restrictive practice. For example staff should learn that most behaviour considered to be ‘challenging’ is really communicating something.
- Every incident needs to be reported and learned from.
- Inspections need to be joined up and improved.
- We are working with the teams at NHS England and NHS Improvement to make sure that there is the right information about restrictive practice and human rights for people with a learning disability, for autistic people, for families and carers and for professionals.
- We are working on an easy read article with information about restrictive practice and about rights for our next easy read newsletter.
Personalised care means getting things right for each person as an individual.
Personalised care is about having choice and control over your own health and wellbeing.
It is about saying what is important to you and what are the right ways to support this.
- We need to make sure people are able to make decisions by respecting individual needs and preferences and making sure people have all the right information. Reasonable adjustments will also help people make decisions.
- All the people who are part of the decision-making process need to work together and understand the different systems involved.
- People need to be supported with self care as early as possible in a way that works for them.
- Notes from the learning disability and autism advisory group are being shared with the personalised care group.
- The engagement team can help to find good practice locally to share.
- The engagement team are working with teams in the personalised care group to help put the group’s advice into action.
Social prescribing is where GPs, nurses and other staff refer people to more things than just medicines and treatments. This is because people’s health can be connected to a lot of different things.
Primary Care Networks are groups of:
- GP practices
- other health services and social care services
- local community groups.
We asked the group how we can make social prescribing and Primary Care Networks work for people with a learning disability and autistic people.
- Social prescribing is done by link workers. Link workers should start by finding out about the person they are supporting.
- Link workers need training and guidance on learning disability and autism, including how to communicate best with people.
- Ask people what they want from social prescribing and what’s already out there.
- Primary Care Networks need to help health and social care work more closely together. This will help change culture.
- We need to make it clear how Primary Care Networks will work locally and how we check that they are working well.
- We are working with the social prescribing team to use the advice of the advisory group. This is to help them make social prescribing work better for autistic people, people with a learning disability and families and carers.
- The Engagement Team will work with the Primary Care Networks team. This is to make this work as good as it can be for autistic people, people with a learning disability and family carers.
Read easy read information about social prescribing and Primary Care Networks.
We talked about how to can make the Learning Disability Mortality Review (LeDeR) programme better and how we can learn from the deaths of autistic people.
- People with lived experience must be involved in local steering groups. Experts by experience need to be given the right support to talk about why people are dying and what can be done to make services better
- We also need to work with people with a learning disability, autistic people and family carers at a national level so planning is based on what is important to people.
- Make sure there is support for people who want to talk about death and dying. This includes communicating in the way that is best for them.
- We need more research to find out why so many autistic people are dying, including in inpatient units.
- The LeDeR programme are starting a national steering group of experts by experience, including people with a learning disability, current family carers and bereaved families.
- The learning disability programme team are thinking about how to find out more about the deaths of autistic people.
Read easy read information about learning from deaths.
Autism is one of the top things in the NHS long term plan. We asked the group what should go in the plan. Read what the group told us about autism in easy read.
- How to make autism assessment better.
- How to make the support before, during and after assessment process better for autistic people and their families.
- What support should be in place to help people avoid crisis.
- Training for health and social care staff should be co-produced and led by autistic people. This should help lead to a wider culture change.
- We shared the advice with policy leads to help as they wrote the NHS Long Term Plan.
Ask Listen Do is a project that helps people give feedback, raise a concern or make a complaint. Find out more about the project here with Ask Listen Do easy read and video resources. Read what the group told us in easy read.
- Tell more people about the resources widely and beyond the NHS, to change culture and help people give feedback.
- Resources in other formats are needed to support the different ways that people communicate e.g. video and apps.
- Find different ways to change culture and get people to listen.
- We launched the Ask Listen Do resources at the House of Lords and are publicising the resources.
- We are working with the Ask Listen Do working group to put the advice into practice.
We asked the group what the biggest things they’d like to help change. Read what the group told us in easy read.
- You would like to help health and social care work together better.
- You would like to improve the culture in the NHS- how we work with autistic people, people with a learning disability and family carers.
- In the NHS Long Term Plan there are ideas for how the NHS and social care can work together – like social prescribing and primary care networks. We will find ways to make sure these include people with a learning disability, autistic people and family carers. Read the NHS Long Term Plan. Watch a video about the learning disability and autism in the NHS Long Term Plan. Read easy read information about the NHS Long Term Plan.
- We will make sure the Advisory Group has their say on learning disability and autism training in the Department of Health and Social Care consultation.
NHS Digital is making big improvements to the NHS.uk website (used to be called NHS Choices). We asked the group what would make it more useful for people with a learning disability, autistic people and family carers. Read what the group told us about NHS.uk in easy read.
- How to make NHS.uk useful and accessible for people with a learning disability, autistic people and families and carers.
- We’ve been working with NHS Digital to make the changes the group suggested, including words that are used and what the pages say. The autism webpages are being reviewed to make them more useful.
The team which looks at payments to GP surgeries for providing some services, like the annual health check, talked with the group. This team is called the Quality and Outcomes Framework review team. We talked about the quality of GP services (your local doctor). The group advised what improvements they would like to see for autistic people and people with a learning disability.
- GPs could get better at supporting people by making reasonable adjustments. These are helpful changes to your healthcare to make it work for you. Awareness training would help.
- It would be useful to have annual health checks for autistic people as well as people with a learning disability.
- Support for patient participation groups, to help them involve more people with a learning disability and autistic people.
- Advice on GP practices working together as networks.
- The quality and outcomes review team have used the ideas they heard in their review.
- We are working on ways to ‘flag up’ people’s support needs on NHS computer systems. Read about summary care records and read about summary care records in easy read.
- The ideas about networks of GPs and patient participation groups are being shared with the new primary care networks.
- The NHS Long Term Plan says we will test annual health checks for autistic people.
The team working on quality checking tools for people with a learning disability to check NHS services asked the group about quality checking mental health services. Read more about the quality checking tools. Read what the group told us about quality checking in easy read.
- Advised on what would be useful in a quality checking toolkit for mental health services and for assessment and treatment units for people with a learning disability, autism or both.
- Advised on what might work in quality checking tools for autistic people.
- The quality checkers team used the advice of the group in the mental health service quality checking tool.
- The team also used advice to start developing the quality checking tool for specialist mental health services for people with a learning disability, autism or both.
- We have heard that quality checking could be useful for autistic people too and continue to feed this into discussions about quality and feedback.
- The group advised on how to make personal health budgets work for autistic people, people with a learning disability and family carers.
- We told the Department of Health and Social Care what the group said in the consultation on extending legal rights to have for personal health budgets and integrated personal budgets.
The Advisory Group told the team who are checking the work of Transforming Care (the evaluators) what they think.
- More work needs to happen on stopping people ending up in hospitals and assessment and treatment units in the first place.
- Listen to and involve the person, their family carers in decisions about the persons care.
- Teach parents and families strategies to help with behaviour.
- Autistic people’s needs still aren’t being met because not enough people know about autism.
- It is hard to get an appointment with mental health services. Waiting times are too long.
- We are using the advice from the advisory group to tell NHS England leadership and Transforming Care Partnerships how to transform care better.
- Autism will become a focus on its own in the NHS Long Term Plan, separate from learning disability and which will look at how we can work better to meet autistic people’s needs.
Always Events are a way hospitals can improve the care people receive. ‘Always Events’ means two things:
- The things that should always happen when someone uses a health service.
People who use the service are the ones who say what the Always Events should be.
- A meeting where a service works with people to say what the Always Events should be for the service.
- Advised on how to make Always Events work for autistic people and people with a learning disability.
- Advised on how to involve people with a learning disability, autistic people and family carers.
- We shared the group’s feedback with the people who work on Always Events at NHS England and with all new NHS trusts joining the programme.
- To help people who are taking part understand Always Events we are improving the easy read information and making a video.
We talked about planning to spend the Transforming Care money on housing. We asked what is important for the new regional housing leads to know to help people get the right homes locally.
- Speak to local experts by experience and involve them from the beginning.
- Start from thinking about supporting people at home. Don’t start from the idea of closing beds or hospitals.
- Make plans for a person to leave a hospital or assessment and treatment unit early. This will stop delays when they are ready to move.
- Make sure people get to visit where they are going to live before they move. This will help them feel less worried.
- This advice was shared with the housing leads at NHS England and the regional advisers at the Local Government Association.