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‘Homes not hospitals’ for people with learning disabilities

People with a learning disability and/or autism* will be supported to lead more independent lives and have greater say about the support they receive under a national plan published today to radically improve learning disability services.

Central to the progress set out by the plan over the next three years will be new, high-quality, community-based services.

Hundreds of people with a learning disability and/or autism are expected to benefit from new, better care options in the community instead of hospitals, with more never being admitted in the first place.

The plan predicts that, as these services are put in place, there will be a reduction of up to 50 per cent in the number of inpatient beds, meaning that some units will close altogether.

In particular, a key plank of plans developed in Lancashire and Greater Manchester will be to close and re-provide services offered by Calderstones, the only remaining standalone learning disability hospital trust in England.

Building the right support: A national implementation plan to develop community services and close inpatient facilities is being published today (Friday 30 October) by NHS England, the Local Government Association (LGA), and the Association of Directors of Adult Social Services (ADASS). The plans it contains have been developed with significant contribution and constructive challenge from people with learning disabilities and/or autism, their families and carers, and a range of commissioners, providers, voluntary sector and representative groups.

It represents a key milestone in the ongoing cross-system Transforming Care programme, which has seen a number of reforms including the roll out of Care and Treatment Reviews and an upcoming consultation response on strengthening the rights of individuals.

While local areas will be able to design bespoke services with those who use them, the plan sets out the need for:

  • local housing that meets the specific needs of this group of people, such as schemes where people have their own home but ready access to on-site support staff;
  • a rapid and ambitious expansion of the use of personal budgets, enabling people and their families to plan their own care, beyond those who already have a legal right to them;
  • people to have access to a local care and support navigator or key worker, and;
  • investment in advocacy services run by local charities and voluntary organisations so that people and their families can access independent support and advice

To achieve the shift from inpatient to community-based services, Building the right support sets out three key changes:

  1. Local councils and NHS bodies will join together to deliver better and more co-ordinated services – 49 new local Transforming Care Partnerships will work with people with lived experience of these services, families, carers and key local stakeholders to agree robust implementation plans by April 2016, and then deliver on them over three years. They will be made up of clinical commissioning groups, NHS England’s specialised commissioners and local authorities, and will cover the whole of England.
  2. Budgets will be shared between the NHS and local councils to ensure the right care is provided in the right place – A new financial framework will aim to speed up discharges, particularly for those who have been in inpatient care the longest, and make better use of resources so that services can be increased and improved. Central to the new framework will be the opportunity for local pooled budgets which encourage better use of resources for all people in a local area with learning disabilities and/or autism. Funding guidance will also be reformed to enable swift discharges. For people who have been in hospital five years or more, specific payments will be made by the NHS to local authorities to enable their needs to be met in the community.
  3. National guidelines will set out what support people and families can expect, wherever they live – A new Service Model describes what good services should look like, framed around nine principles from the perspective of the people using them. It gives people a clear picture of what they can expect from the services they use, while at the same time allowing Partnerships the flexibility to design and commission services that meet the needs of people in their area. The new model, which was co-produced by people using services, commissioners and health and social care system leaders, has been finalised using the feedback from early implementation by six ‘fast track’ areas.

Simon Stevens, Chief Executive of NHS England, said: “As good and necessary as some inpatient care can be, people with learning disabilities are clear they want to live in homes, not hospitals.

“We’ve seen some progress over the last few years, but now is the moment to grasp the nettle and build the excellent community-based support that will allow people to move out of hospitals.”

Jane Cummings, Chief Nursing Officer for England and Chair of the Transforming Care Delivery Board, said: “Society has failed this group of people for decades. Now is the time to put things right, and with this far-reaching plan I am confident that we can finally make quick, significant and lasting improvements to their lives.”

Ray James, ADASS President and Vice-Chair of the Transforming Care Delivery Board, said: “ADASS welcomes this clear and ambitious national plan and is committed to ensuring that people with learning disabilities are supported to lead meaningful, independent lives in their local community wherever possible.  This is already the case in many parts of the country: it can and must be done everywhere else.”

Cllr Izzi Seccombe, Community Wellbeing Spokesman, Local Government Association, said: “Councils want people with learning disabilities to have access to the right care and support they need in the right place, at the right time. Local authorities and the NHS have been working hard to make progress in providing this, but we also know that there is still more to be done.

“It is right that the transforming care plan is aiming to improve how care is provided for people with learning disabilities, including autism, and this needs to happen urgently.

“The LGA is fully committed to supporting this programme but at a time when councils are facing continued financial pressures, it is vital that the Government properly funds the changes needed in the social care system so that people who need support get the vital help that they deserve.”

In England, around 24,000 people who have a learning disability and/or autism are classed as being at risk of admission. Although the number of discharges or transfers has increased by 38 per cent over the last year, 2,595 people were in inpatient settings as of 30 September, more than three quarters of whom had been in inpatient facilities continuously for longer than a year.

While these placements are often a necessity in the short term, in too many cases they are used as a long-term option due to a historic lack of community-based services. These arrangements do not deliver the best outcomes for these people. They are also expensive, costing the health and care system on average over £175,000 per year for often-inappropriate care.

As new and better alternatives become available in the community, the plan predicts a reduction in inpatient beds of between 30 and 50 per cent nationally. In some areas that have relied on inpatient settings more than average, the number of beds which will be commissioned may be reduced by up to 70 per cent.

This should free up hundreds of millions of pounds for investment in community-based support, as well as improving the quality of remaining inpatient units so that they can meet the needs of patients in the new system.

A national NHS England fund of £45m will be available to Transforming Care Partnerships over the next three years to aid the transition, focussing on ensuring that the right support is available in local areas to enable the first discharges. £15m will be available for capital projects, and £30M is available on a match-funding basis for local commissioners to ‘double-run’ services, meaning a total transformation fund of £75m.

Bed closures will be staged, taking place when suitable alternatives are available. Providers such as hospital trusts will be supported by NHS England and others to adapt to the new model, shifting their own services to the community where possible.

Progress made will be reviewed before the end of 2018 with a view to establishing whether the number of beds could and should be reduced further in following years.

Over the summer of 2015, NHS England, the LGA and ADASS supported six ‘fast track’ areas to draw up plans for service transformation, closing some inpatient beds and shifting investment into community support.

A £10million transformation fund was made available to these areas to help fund the fast implementation of their local plans, which have been published alongside today’s national documents. The initial allocation of the fund, to cover workforce development and building capacity in the community, is as follows:

  • Greater Manchester – £3.00m;
  • Lancashire – £1.32m;
  • Cumbria and the North East – £2.06m;
  • Arden, Herefordshire and Worcestershire – £825k;
  • Nottinghamshire – £1.21m; and
  • Hertfordshire – £1.27m

Calderstones Partnership NHS Foundation Trust is the only remaining standalone learning disability hospital trust in England, with 223 beds.  Mersey Care NHS Trust intends to take over Calderstones Partnership NHS Foundation Trust, which from July 2016 will cease to exist.

The plans developed by Greater Manchester and Lancashire Fast Tracks with NHS England Specialised Commissioners, subject to consultation, will implement a new service model resulting in the closure of remaining inpatient beds at Calderstones. NHS England will cease commissioning secure services on the Calderstones site.

All hospital beds on the current Calderstones site will therefore, subject to consultation, close and be re-provided over the next three years on a case by case basis for each patient, in the community or in new state of the art units elsewhere in the North West, and the Calderstones site will close.

*Throughout, this term refers to children, young people and adults with a learning disability and/or autism who display behaviour that challenges, including those with a mental health condition.

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18 comments

  1. Derek Groves says:

    The document ‘Building the right support’ referenced in the article above refers to a Newcastle innovative housing initiative, developed through collaboration
    between social care providers and an NHS provider. Where can I find out more details about this innovative initiative? Who can I contact to discuss transition plans in the NE?

    Regards

  2. Much of this was proposed in the initial closure of hospitals in the 1980s I hope NHS England are going to use the expertise of people who KNOW how to get people good lives with the right support in the right amount, at the right time by the right people. I hope people are not going to be grouped together with people they do not know each other and have nothing in common. Let’s work to get this right for people by working with them, their families, housing associations, local authorities, NHS AND PROBATION AND POLICE WHERE NECESSARY. MAKE SURO PEOPLE AND FAMILIES WORK TOGETHER TO GIVE GOOD RESOIRCES FOR PEOPLE WITHOUT OVER WHELMING THEM WITH CHANG. Have everyone involved and making joint decisions . People can return to their own commmunities leaning the skills of relationship, real participation and having friends. Let’s give the right team with passion and commitment to empower them to live harmoniously in their communities.

  3. worker at the hospital says:

    so calderstones is closing ‘again’. were people with ‘learning disabilities’ not resettled from there in the 80’s and was it then transformed into a forensic service. I do believe this happened? will NHS England make all the existing staff redundant ? Truth please!!!

    • NHS England says:

      Thank you for your comment.

      As a society, we are on a long journey to ensure that people with a learning disability and/or autism have a home within their community and are supported to develop and maintain relationships and have rewarding lives.

      Reforming the services delivered by Calderstones Partnership NHS Foundation Trust is therefore an essential part of delivering the change we want to see and over the summer Greater Manchester and Lancashire ‘Fast Tracks’ have been supported to develop plans to do this.

      Consultation and engagement with the people affected – including people’s loved ones, as well as staff – will be central to this process of change and we are committed to ensuring that people are always involved in these decisions. An essential part of the plan will be to effectively harness the skills and experience of staff already working in hospitals and support them to develop the new skills that will be needed.

      As set out in ‘Building the right support’, all hospital beds on the current Calderstones site will therefore, subject to consultation, close and be re-provided over the next three years on a case by case basis for each patient, in the community or in new state of the art units elsewhere in the North West, and the Calderstones site will close.

      Kind Regards
      NHS England

  4. Dr David Clarke says:

    I completely support the idea that people with learning disabilities should live in homes not hospitals, and that admission should be a last resort and for the minimum time necessary. However, there are a (very small but significant) group of people with LD who either need assessment and treatment for psychiatric disorder or who pose forensic risks that cannot safely be managed in community settings. The pressure to avoid admission at all costs is, in my experience, leading to increasing risks for this small sub-group and for the general population. I hope this does not lead to the sort of high-profile incident that has occured for other patient groups in the past.

    • NHS England says:

      Thank you for your comment.

      Just like the rest of the population, people with a learning disability and/or autism must and will still be able to access inpatient hospital support if they need it. What we expect, however, is the need for these services to reduce significantly. For the limited number of beds still needed, these should be of higher quality and closer to people’s homes. For those that do need this more specialist support, it should be for the shortest time possible.

      Kind Regards
      NHS England

  5. Ms Jones says:

    As a carer I’m already @ breaking point, caring, without help & expected to live on £66 a week Carers Allowance. I care for 2x family members with autism. Respite? What respite! I’m not entitled to a carers assessment because the people I care for are teenagers & below age 18. We have no life, no quality of life, i’m sleep deprived & exhausted & this strategy would put more vulnerable people & exhausted carers into this abysmal situation. History shows us that ‘care in the community’ really means ‘NO care in the community’.

    • NHS England says:

      Thank you for your comment.

      We know that many people with a learning disability and/or autism, as well as their families/carers are frustrated. We know too that thousands of frontline carers, clinicians, providers and commissioners want to make progress.

      Supporting families and carers in the community is a key part of ensuring that people are well supported, the 2014 Children’s Act makes it clear that local authorities should assess the support needs of parent carers, including those caring for people under the age of 18.

      The service model describes a range of services and supports that should be in place within any local area within the current legal framework. Depending on their needs and circumstances, people with a learning disability and/or autism and their families/carers should be able to draw upon the support described in the model in a way that is right for them. They should also be supported to navigate their way through an often complex system.

      Kind Regards
      NHS Englans

  6. Dr RF Travers FRCPsych says:

    Ignorantia juris non excusat! Post ‘Cheshire West’ the legal framework for delivering care in the community for individuals who lack capacity and who are a risk to others has gone in the direction of having to use the Mental Health Act 1983. All the recent policy documents are strangely silent on this forensic fact. This is both irresponsible and inexcusable

    If the 9 principles are to mean anything, and if citizens wish to safely include in their communities incapacitous individuals with an intellectual disability who are specifically a risk to others, then the CQC will need to be involved in innovative discussions about certifying community settings as ‘hospitals’ within the meaning of the Act. Otherwise with such a hospital closure programme underway, many individuals won’t have beds available for them if formally detained under the Act…i.e. they will again be excluded from access to the services they need.

    • NHS England says:

      Thank you for your comment.

      We will work with the CQC, Monitor and the TDA and local commissioners to ensure that inpatient units are only closed when people living in those units are supported to move in an appropriate and timely way to high quality services that can meet their needs.

      People with a learning disability and/or autism, who need specialist support, must and will still be able to access inpatient hospital support if they need it. For the limited number of beds still needed, these should be of higher quality and closer to people’s homes.

      Kind Regards
      NHS England

    • Isobel says:

      Don’t you think common sense will prevail??

      It is health professionals like you that are the problem and not the solution. I am sure that any plans to integrate a person with a disability / mental health problem in the ‘community’ will be subject to a full individual risk assessment, both to protect that person’s vulnerablity and the community as a whole.

  7. Frannie says:

    Calderstone may be closing but private hospitals expanding.St Andrews in Northampton have a massive expansion plan for approx 120 beds. Really alarming!

  8. C.heasle says:

    Here we go again then. What happened to all those wonderful promises from the Learning Disability Task Force and all the money thrown at that?? Absolute disgrace that this is still waiting to be

  9. Anonymous says:

    Are there any more details available on the Capital Fund and the Transformation Fund mentioned in the document – Building the Right Support?

    • NHS England says:

      Thank you for your comment.

      There will be £30 million transition funding over the next three years (2016-2018) with match-funding from commissioners. This is in addition to the £10 million that has already been allocated to the fast track areas. There will also be the opportunity to bid for £15 million of capital funding. We will be providing more details to the new Transforming Care Partnerships shortly.

      Kind Regards
      NHS England

  10. Lucy Virgo says:

    On behalf of the National Forum of People with Learning Disabilities – is there or will there be an easy read version of the plan available?