Date published: 5 January, 2024
Date last updated: 11 January, 2024
Learning disabilities and autism

Five key elements for discharge – supporting people with a learning disability and autistic people to leave hospital

To:

  • Integrated care board:
    • chief executives
    • chief operating officers
    • chairs
    • medical directors
    • clinical directors
    • learning disability and autism executive leads
    • downs syndrome executive leads
    • executive nurses
    • transformation leads
    • mental health leads
    • children and young people leads
    • special educational needs and disability leads
    • learning disability and autism commissioning leads
    • mental health commissioning leads
    • directors of adult social services
  • Programme director for primary care collaborative
  • Community learning disability teams’ lead nurse
  • Learning disability liaison acute care chief nurses

Dear colleagues,

Five key elements for discharge – supporting people with a learning disability and autistic people to leave hospital

We are impressed by the commitment that we see from teams up and down the country, in ensuring that people with a learning disability, and all autistic people, can live the lives that they choose in their local communities, and we are making good progress towards reducing the number of people in hospital care.  However, we know we have further to go, and we are asking you to use this letter and the learning above as a lever for change, to galvanise all our efforts, as the work that you do truly makes a difference to people’s lives.

The safe and wellbeing reviews carried out by integrated care systems, looking into the care of autistic people and people with a learning disability in a mental health hospital, found evidence of good care, and people whose needs were being well met within hospital.  However, they also found that 41% of those people in hospital had care and support needs that meant they did not need to be in hospital. We know that this is harmful to people’s physical, mental and emotional wellbeing. 

We need to make sure that all autistic people, and people with a learning disability, can live in homes that they have chosen, and do not go into hospital unless they need treatment and support for their mental health – when inpatient admission is appropriate, this should be for as short a period of time as possible. Colleagues working in integrated care systems, the NHS and local authorities, have worked hard to achieve this, with more than 10,700 people discharged into the community since 2015.  However, despite investment at a local level, there are still too many people being admitted to mental health hospital when their care could be continued within their community.

Health and social care partners, supported by regional NHS teams, have continued to commission services, develop hospital discharge pathways, address avoidable admissions, and provide focused support where there are barriers to people being discharged from hospital, and where people are subject to restrictive practice in hospital. This work includes provision of senior intervenors, keyworkers for children and young people, independent Care (Education) and Treatment Reviews (iC(E)TRs). This work is alongside work from the Local Government Association and the Association of Directors of Adult Social Services as Partners in Care and Health (PCH). PCH supports councils to improve the way they deliver adult social care and public health services and helps Government understand the challenges faced by the sector.

As NHS England working with PCH, we have pulled together all of the learning from this work and set out the five key elements that people have told us have the biggest impact on helping people with a learning disability and autistic people to leave hospital when they no longer need hospital care.

Five key elements

  1. Agree as a local system that delayed discharges are a potential harm event, as is also the case for discharges to the wrong place without the care and support which people need. Treating deadlines relating to discharge planning as immoveable unless absolutely necessary to better support the person’s safe discharge to an appropriate community setting, and identifying a lead member of staff to oversee each person’s discharge.
  2. Use the existing tools and frameworks (including the 12-point discharge plan, the clinically ready for discharge definition, the joint guiding principles, and Care (Education) and Treatment Reviews (C(E)TR) and the C(E)TR toolkit discharge standards) to set out agreed roles and responsibilities and collaborative working principles for all partners involved in the person’s care, including those who will be supporting the person in the community.
  3. Demonstrate that in decision-making about the person’s physical and mental health care in hospital, their discharge plans (including transition arrangements and life planning), and their options for community care, support and housing or accommodation when they leave hospital, you have co-produced this with the full involvement of the person, their family (as appropriate), and the person’s advocate.
  4. Identify and engage at the earliest opportunity with all relevant partners, including (where appropriate) the Care Quality Commission, and the Ministry of Justice where there are restrictions relating to a person’s care and discharge.
  5. Throughout a person’s inpatient stay:
    • ensure that the clinical care and treatment plans are based on a holistic assessment of need, and have a plan for discharge from the point of admission
    • have a continued focus on the person’s mental, physical and emotional wellbeing
    • ensure that discharge planning properly considers any support needed through the transition from hospital to life in their local community.

These are themes that you know very well, but we are asking that, together, over the next few months we have a concerted focus on making sure these things are happening for everyone with a learning disability and every autistic person in a mental health hospital (including mental health hospitals that are just for people with a learning disability and autistic people, or assessment and treatment units). 

We know that small changes, or those actions that may be considered the most basic or straightforward, can often have the biggest impact.

We are asking you to check – for all people who have a learning disability and autistic people, and who are in a mental health hospital – what more do you need to do to put the five key elements in place.

There are a range of financial resources available for your use and signposting to these existing resources could greatly support people to live the lives that they choose. They include:

  • £1.6 billion of additional funding in the Department of Health and Social Care Adult Social Care Discharge Fund in 2023/24 and 2024/25, to be pooled into the Better Care Fund.
  • NHS England Service Development Fund for community transformation and children and young people’s keyworking (£121 million available nationally in 2023/24, allocated on a fair shares population basis, based on integrated care board geographical footprints).
  • NHS England housing capital (NHS England regional housing leads have more information).
  • NHS England Specialised Commissioning Pathway Fund/recurrent funding transfer agreement.

NHS England regional leads for learning disability and autism have more information on these funds.

We have provided some questions for system colleagues to ask in relation to the five elements in appendix 1, and a selection of resources that you may find helpful in appendix 2. We know that you will be aware of these already but are listing these here so that you have them together in one place.

If your system has good practice to share, please contact your NHS England regional team, care and health improvement adviser or Association of Directors of Adult Social Services regional team in the first instance, so that we can help others to benefit from your good work.

Thank you for your continued support.

Yours sincerely,

Tom Cahill, National Director, Learning Disability and Autism, NHS England

Richard Parry, Honorary Secretary, Association of Directors of Adult Social Services 

Hazel Summers, Director of Adult Social Care Improvement, Local Government Association

Appendix 1 – the five key elements

 Further detail on our learning about what makes a difference for people who are ready to leave a mental health hospital.

Element 1: Seeing a delayed discharge as a ‘harm’ event

Agree as a local system that delayed discharges are a potential harm event, as is also the case for discharges to the wrong place without the care and support which people need. Treating deadlines relating to discharge planning as immoveable unless absolutely necessary to better support the person’s safe discharge to an appropriate community setting, and identifying a lead member of staff to oversee each person’s discharge.

Why is it important?

Learning from the safe and wellbeing reviews tells us that 41% of individuals in hospital could have had their care and support delivered elsewhere.

It can be complex to support someone to leave mental health hospital; we know that there are many moving parts that need to come together, with timelines that can slip and change. 

However, learning from local areas shows that when there is pressure held to deadlines, when they are treated as immoveable, and when all parties say “what will it take to make this happen”, it can make a huge difference in galvanising action.

It is important that timelines are realistic, taking into account all of the factors that need to happen to make sure that the person can leave hospital in a safe and planned way.

What helps?

  • Use the existing tools and frameworks (including the 12-point discharge plan, the clinically ready for discharge definition, and Care (Education) and Treatment Reviews and discharge standards) to agree roles, responsibilities and actions.
  • Having clear routes of escalation for any disagreements between teams either within the NHS or across health and social care.
  • Having a ‘do what’s right for the person first’ approach, agreeing with partners that disputes will be resolved afterwards.

Questions to ask

  • Does everyone involved in the person’s housing and care planning/discharge plan have a clear set of actions, with deadlines?
  • Is there a means of ensuring that all individuals are held to account for delivery of actions, to ensure continued pace? This will include hospital staff (both clinical teams and care co-ordinators), social care teams, those supporting the person and their family to plan where the person will live, and those who will be providing care and support to the person when they leave hospital.
  • Is there a named health and social care lead responsible for the person’s discharge?
  • Is there an agreed ‘trigger point’ whereby the delayed discharge would be escalated, if progress is not made in line with expectations?
  • Has learning from the safe and wellbeing reviews for the integrated care system been identified, with plans put in place to action key themes?

Element 2: Agree how people will work together to plan a person’s discharge

Use the existing tools and frameworks (including the 12-point discharge plan, the clinically ready for discharge definition, and Care (Education) and Treatment Reviews (C(E)TR) and the C(E)TR toolkit discharge standards) to set out agreed roles and responsibilities and collaborative working principles of all partners involved in the person’s care, including those who will be supporting the person in the community.

Why is it important?

The safe and wellbeing reviews found that the 12-point discharge plan was only used for around half of all children, young people and adults in hospital. Are all those in your system involved in discharge planning aware of the 12-point discharge plan, and the discharge standards within the C(E)TR policy, and do they proactively use this for all individuals to make sure that all relevant steps have been considered?

We know that disagreements between professionals/teams/organisations, eg about responsibility or funding add delay to discharge pathways and so it is important to have mechanisms in place for quick resolution of any disagreements or dispute.  

There is usually the lowest chance of readmission when there has been a period of transition between hospital and the community for the person, with the community provider able to ‘in-reach’ into the hospital setting. This helps the provider to support the individual through the transition process, with community staff able to get to know the individual. 

Similarly, it can be beneficial if, for a period following discharge from hospital, the care, support and housing providers have access to clinical advice as the person settles into their new home and routine. 

What helps?

  • Use the existing tools and frameworks (including the 12-point discharge plan, the clinically ready for discharge definition, and Care (Education) and Treatment Reviews and discharge standards) to agree roles, responsibilities and actions.
  • Having clear routes of escalation for any disagreements between teams either within the NHS or across health and social care.
  • Having a ‘do what’s right for the person first’ approach, agreeing with partners that disputes will be resolved afterwards.

Questions to ask

  • Is the person having regular Care (Education) and Treatment Reviews (C(E)TRs) and have they been added to their local dynamic support register (DSR)? 
  • Are keyworkers allocated to children and young people on the dynamic support register, in areas with operational keyworking services?
  • Are all system partners aware of the new DSR and (C)ETR policy?
  • Does everyone involved in the person’s discharge have a clear role, and have these been reviewed and written down to make sure there is no duplication or misunderstanding of who is responsible for which part of the person’s discharge planning?
  • Are there clear routes of escalation for disagreements?
  • Is there timely decision-making, with responsibility for decision-making appropriately distributed, not all resting with one person or a very small number of people? 
  • Are there clear routes for accessing funding and to make decisions dynamically if situations change (eg being able to make decisions outside of formal funding panel meetings)?

Element 3: Coproduction

Demonstrate that in decision-making about the person’s physical and mental health care in hospital, their discharge plans (including transition arrangements and life planning), and their options for community care, support and housing or accommodation when they leave hospital, you have co-produced this with the full involvement of the person, their family (as appropriate), and the person’s advocate.

Why is it important?

It is a fundamental right of people that their voices and needs are at the centre of all planning and decision-making. The thematic learning from the safe and wellbeing reviews demonstrated that, for many people in hospital, access to advocacy and respecting the role of families as advocates was unsatisfactory and led to poorer outcomes.

What helps?

  • Use the principles of Ask Listen Do to understand the person and their needs, from the person and the people that know them best.

Questions to ask

  • Have the principles of Ask Listen Do been used to understand the person and their needs, from the person and the people that know them best.
  • Are people offered and taking up the support of an independent advocate?
  • How is the person and their family supported to advocate for themselves where possible and how are their wishes listened to and acted on?
  • What system governance is in place to ensure the person, their family where possible, and advocacy are fully involved in and influencing plans and decisions to meet the person’s needs?

Element 4: Strong partnerships to support timely discharge

Identify and engage at the earliest opportunity with all relevant partners, including (where appropriate) the Care Quality Commission, and the Ministry of Justice where there are restrictions relating to a person’s care and discharge.

Why is it important?

We know from Assuring Transformation, that commissioners have reported that housing and accommodation planning has not started for nearly two-thirds of all people with a learning disability and autistic people in hospital.

We know that it can cause delays in people being discharged if the housing care and support that a person may need when they leave hospital is not discussed and planned early in the person’s hospital stay.

What helps?

As soon as admission happens, and wherever possible prior to it, a discussion of what housing, care and support the individual may need when they leave hospital.

Write a clear statement of need, informed by the person themselves, their family, and based on clinical need, that the commissioner can use to put in place the appropriate care, housing and accommodation for the individual outside of hospital.

For individuals that are under Ministry of Justice restrictions, it is essential to have early, informal conversations with the Ministry of Justice casework section about the proposed care plan outside of hospital, to ensure that any potential issues can be quickly identified and addressed.

We know that circumstances can change and this can present a risk to the person’s planned discharge: have a discussion about risks to discharge plans, and have different options been considered that will still meet the needs of the person, ie a ‘plan b’.

Questions to ask

  • Have all of the relevant partners been involved, eg the Care Quality Commission if a new care, support or housing solution is being considered, and the regional NHS England housing lead? 
  • Are strong professional relationships and agreed delivery plans in place between health/social care commissioners and local housing partners, to ensure that suitable housing options are available when people need them?
  • Have you involved local authority strategic housing leads, local housing benefit teams and housing providers, to ensure that suitable housing options are available when people need them? The NHS England Brick by brick housing resources will be useful here.
  • Are there a range of housing options available or in development, reflecting the diversity of housing needs which is likely to be identified?

Element 5:  Holistic, person centred care in hospital  

Throughout a person’s inpatient stay:

  1. ensure that the clinical care and treatment plans are based on a holistic assessment of need, and have a plan for discharge from the point of admission
  2. have a continued focus on the person’s mental, physical and emotional wellbeing
  3. ensure that discharge planning properly considers any support needed through the transition from hospital to life in their local community.

Why is it important?

We know that where there is disagreement between professionals about someone’s clinical care and treatment plan, or a lack of clear care and treatment planning, this can contribute towards an extended length of stay in hospital for the person. 

Sometimes considerable time can be added to a person’s discharge pathway. The safe and wellbeing reviews found thematic learning about the poor attention often paid to individuals’ physical health and wellbeing, with weight gain and associated health conditions being a key concern for many individuals.

What helps?

Delays in a person’s discharge pathway are sometimes caused by concerns within the system related to risk. It helps if the local health and social care system has a shared understanding and practice on assessing and responding to perceived and potential risks, which includes listening to people and families.

It is important, that for each person in hospital, there is a continued focus on their mental, physical and emotional wellbeing throughout discharge planning and this includes being aware of how people need to be properly supported through the transition from hospital to life in their own community.

Questions to ask

  • Is there a clear clinical care and treatment plan that has been developed collaboratively with the person and their family members that considers the person’s strengths and areas of need?
  • Has the care and treatment plan been developed and/or shared with professionals who will be supporting the person in the community?
  • Is this care and treatment plan included in the Section 117 aftercare planning process for the person?
  • Has there been a discussion about how discharge planning might impact someone’s mental and emotional health, and has clinical support being engaged where appropriate to help the person and others to address any psychological distress?
  • Has there been specific focus on individuals’ physical health care needs and is support readily available to meet these?

Appendix 2: Useful resources

Publication reference: PRN00109

Date published: 5 January, 2024
Date last updated: 11 January, 2024