National group to drive improved healthcare support for people with learning disabilities

NHS England has asked Sir Stephen Bubb, the Chief Executive of charity leaders network ACEVO, to head a new group of experts and advisors to develop a national guide for how we provide health and care for those with learning disabilities.  The group will also include healthcare, charity and voluntary sectors, as well as with people with learning disabilities and their families. It aims to design more innovative and integrated local commissioning of healthcare and housing to best support people with learning disabilities at home and in their communities, reducing reliance on hospital care.

Jane Cummings, Chief Nursing Officer for NHS England, said: “People with learning disabilities, autism or challenging behaviour, often have complex health needs and it is vital that they have health and care support in their homes and communities.

“Too often we see people being admitted to an inpatient setting and staying for long periods of time purely because this support is lacking. This is not good for patients and through the Winterbourne Joint Improvement Programme, we are addressing this by ensuring local areas improve their discharge and care planning arrangements.

“But many areas need wider service redesign, greater integration and longer-term, sustainable solutions. We are seeing more co-commissioning with local authorities but this needs to be expanded and accelerated. We need to ensure that funding follows the individual. The new group will drive this, drawing on essential expertise from the third sector and importantly from patients and carers. I am pleased that we have the experience and expertise of Sir Stephen Bubb to lead this process.”

Commenting on the launch of the group, Sir Stephen Bubb, CEO of ACEVO said: “The Government made a brave pledge to improve the quality of care for people with learning disabilities in the Winterbourne View Concordat. While I am delighted that Simon Stevens has asked me to help create a plan to support the Government meet that pledge, I am also determined to bring the experience and strength of the third sector to help transform care for people with learning disabilities.

“Co-commissioning with charities and social enterprises in this way is unprecedented in the NHS and offers new solutions to these problems. I believe that the third sector will bring the innovation required to create a sustainable ‘national framework, locally delivered’.”

The key objectives of the group are to:

  • develop models for local implementation that meet the needs of people with learning disabilities and autism
  • develop funding models for new services
  • identify potential sources of social investment
  • identify the best way for funding to meet individual needs
  • seek input and guidance from partners working in this field.

The group will provide a final report by the end of October 2014 to inform commissioning.


  1. Karen Fellows says:

    I would like to contact someone regarding this work to find out more in relation to work we were planning to undertake regarding LD and Obesity. Can you please provide me with contact details. Thank you

  2. Nicola Carter says:

    Sounds very interesting, would love to be a part of this. How can local CLDTs get involved in order to be supported in promoting positive health education initiatives being developed with local people with LD to a wider audience?

  3. elizabeth.pickard says:

    i need urgent help my son as complex needs receiving no support ….housing being a serious issue now im threatend with eviction because of bedroom tax even thou i have tried to down size im in a no win situation any help would be very much appreciated

    • NHS England says:

      Hi Elizabeth,

      I have passed your details on to our customer contact centre and someone will be in touch to discuss your situation.

      Kind Regards
      NHS England

  4. Ian Penfold says:

    I am a parent/carer who has extensive experience of some of the problems that cause poor healthcare especially for those with complex needs. I also work with my County LD Partnership Board and several disability groups and the CCG in my area to try and improve access to healthcare for those with learning disabilities. I would therefore relish the opportunity to join this group as there is much to do and much we can do.

  5. Tony Fahy says:

    In Devon we have just gone through an extensive redesign involving all stakeholders to better meet the health needs of people with a learning disability. this primarily challenged the idea of the old CLDT model that came out of the hospital closures in the 70’s and 80’s.
    Agree that imaginative solutions nee to be found in commissioning for maintaining good healthg and promoting well being

  6. Meg Graham says:

    I am a community support worker at the sharp end of adult learning disability support provision. I sincerely hope this really is about improving the lives of service users and not a lot of window dressing with more cost cutting in the drivers seat. If local services for learning disabled adults see further cuts many of those I support may no longer be safe in the community. Which would be a damned shame because they all have the potential to contribute to society positively, given a little help

  7. Samuel Edwards says:

    The way learning disability and mental health services are set up often means that people with autism (and/or a milder learning disability) either fall through the net or are passed backwards and forwards. This issue seriously needs addressing, possibly through the commissioning of autism-specific services, or by adjusting the elegibility criteria and skills of existing services so that they serve a wider range of vulnerable people.
    Learning Disability Liaison Nurse – Cornwall

  8. Peter Beard says:

    This area is extremely complex and requires intelligence around the numbers and needs coming through from childrens services. This sort of modelling is difficult- how do you predict the people (and subsequently their needs) who will need Mental Health input through adulthood- we need a preventative approach on a localised level through the transition pathway.

  9. Amanda Burns says:

    I look forward to reading the results of this working party as there is a massive gap in service provision for clients with Learning Disabilities, Autism and Complex Needs.
    The responsibility under allocated Care Management for finding placements under the repatriation into county program has been a long and difficult process.
    After joint working with the private sector, the clients, families and commissioners service provision has been achieved at high expense due to the support required.. In my experience the most successful services have been bespoke services where clients are genuinely integrated into community settings rather than village developments en masse segregating clients from society by the very nature of the service provision.
    I hope a solution is found for funding appropriate inclusive service designs using up to date demographic information at local level so that delays are kept to a minimum at the transition stages.

    Community Learning Disability Nurse

  10. Hugh Williams says:

    We here at Queen Alexandra College provide a range of support and different services in and around Birmingham and would welcome being a part of such a group. Please could you email details to the above address

  11. Mary Susan Moore says:

    As Chief Nurse at a CCG I would be very willing to support this work, and bring a commissioning perspectice. The challenges are very real for my Continuinmg Healthcare Team.

  12. Ann Norman says:

    I would be very happy to support this work and share with you the work of the Royal College of Nursing which includes a number of publications and resources around learning disability care, support and provision

  13. Gynis Smith and Jayne Thompson says:

    Gynis Smith acute liaison nurse and Jayne Thompson primary liaison nurse for learning disabilities in Doncaster would like to enquire how to become part of this group of advisors, please could information regarding this be forwarded to the email provided. Thanks.

  14. Phillippa Swindell says:

    As an ex-commissioning officer and member of the team which closed Budock Hospital in Cornwall I would be interested in knowing more about how I could become involved. I am currently a specialist advisor for CQC but to date have not been requested to attend inspections. Hopefully the plan above will include people who use services, carers and professionals who have been successful in both the closure of services and the development and monitoring of new ones.

  15. Mary Emurla says:

    The NHSE East of England Strategic Clinical Network for mental health, dementia, learning disability and autism, and neurological conditions is delighted to hear about this group. There’s an active learning disability network in the east of England and we’d be interested to hear how we can get involved.

  16. Jean Howard says:

    It is essential that people with learning disabilities and their families, who have cared for them and have expert knowledge of their needs, are involved throughout the process. It is NOT sufficient just to “consult” with them from time to time. When this happens public money is wasted on inappropriate provision, which eventually has to be replaced, after much individual suffering and great public expense.

    • Isabella Thomas says:

      I agree Jean. When these young people reach eighteen years of age families are pushed out of the loop and they have to pay solicitors thousands of pounds of money they cannot afford to become legal guardians.

  17. sally donaghey says:

    Please would you provide contact details for individuals who would be interested in joining the group?

    SCN’s will be able to provide invaluable information and details of experts in their area who would be able to contribute to this important piece of work.

    Many thanks,

    Sally Donaghey
    Quality Improvement Lead
    Strategic Clinical Network, East of England.

    • sarah haines says:

      Hi Sally i would be interested in finding out more about this group. sarah haines clinical nurse specialist learning disability southend hospital

  18. Jacqueline Clarke says:

    Where are the true stakeholders in this conversation and planning? Where is the principle of ‘Nothing about us without us!’ .
    Plans will be explored even firmed up and then perhaps go to consultation where the people with the most at stake then at e invited to comment, ‘comment not plan!’.
    We are always put into a subordinate position, and by default put in the position of being a critic rather than a true partner from the outset.
    How many more times must we be the uninvited guest?

    Family Carer &
    Representative in public involvement program’s.