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Commissioning guide


8 February 2013

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Health services for people with learning disabilities have been in the news lately.

This time because of abuse inflicted on patients at Winterbourne View care home and revelations that some of the patients continued to be mistreated in their new homes.


It is important this abuse ceases to occur and that the new clinical commissioning groups  (CCGs) are equipped with the knowledge and support they need to plan and deliver quality services for people with learning disabilities.

Health services for people with learning disabilities have been in the news lately.

This time because of abuse inflicted on patients at Winterbourne View care home and revelations that some of the patients continued to be mistreated in their new homes.


It is important this abuse ceases to occur and that the new clinical commissioning groups  (CCGs) are equipped with the knowledge and support they need to plan and deliver quality services for people with learning disabilities.


The Royal College of General Practitioners (RCGP) in partnership with the Improving Health and Lives Learning Disabilities Public Health Observatory (www.ihal.org.uk) and the Royal College of Psychiatrists, have written a practical guide that will help CCGs, working with health and wellbeing boards to commission health services to achieve better health outcomes for people with learning disabilities.


The guidance will help to:
– Commission high quality, cost effective general and specialist health services for people with learning disabilities.
– Jointly commission services for people who challenge services and those with complex needs.
– Work with local authorities and others to address the social factors that adversely affects the health of people with learning disabilities.
In England in 2011, an estimated 286,000 children and young people under the age of 18 had learning disabilities and an estimated 905,000 adults had learning disabilities, of whom 189,000 were known to learning disability services. This means that roughly 20 people in every 1,000 have a learning disability and a substantial number of families and carers are involved.

People with learning disabilities have significantly higher rates of mental health problems than the general population. Anxiety and depression are particularly common among people with Down’s syndrome, and there is evidence to suggest that the prevalence rates for schizophrenia in people with learning disabilities may be three times greater than for the general population.

Disability hate crime and violence can feature in many people’s lives and can dramatically affect their confidence and wellbeing. The incidence of epilepsy, dementia and other physical health problems are significantly higher in this group and need local expertise and support.

While people with learning disabilities are living longer, they are still dying younger and have poorer health than the general population. These differences are to an extent avoidable, and therefore represent health inequalities, which public services have a duty to address.

Health inequalities are caused by the interaction of several factors, including overt discrimination, barriers to accessing health care and increased rates of exposure to the social determinants of health such as poverty and social exclusion.

The guidance uses evidence about health inequalities to explain why commissioning good quality health services for people with learning disabilities is a priority, and includes links to further information such as the Local Health Profiles: www.ihal.org.uk/profiles

The profiles bring together nationally collected data on the local population of people with learning disabilities with regional and national comparators and are designed to aid local areas to develop joint strategic needs assessments to inform commissioning and address health inequalities. The guide also includes appropriate sections from the National Outcomes Framework and the local health self-assessment (SAF) indicators with a link to the results: http://www.improvinghealthandlives.org.uk/projects/self_assessment/regions.


The SAF gives a good indication of how health services are responding to the needs of people with learning disabilities, and enables commissioners to compare themselves to other areas. Knowing about the local population and current service provision is an important first step to planning better local services and reducing the need for institutions like Winterbourne View.

The guidance is separated into five main sections:
1. Access to primary care services.
2. Access to acute hospital services.
3. Specialist learning disability services.
4. Wider health and wellbeing issues.
5. Cross cutting services.


Primary care services are included as GP practices have a key role in co-ordinating services for people with learning disabilities. Issues such as reasonable adjustments, annual health checks and family carers needs are covered in this section.


Cross cutting services include a number of issues GPs and others thought were important, but which didn’t fit neatly into the categories above. Continence, dysphagia, postural care and wheelchair services are some of the subjects covered in this section.


The joint commissioning panel for mental health at the RCGP is currently writing good practice guidance on commissioning mental health services for people with learning disabilities and this is due to be published by the end of March 2013. CCGs should ensure that people with learning disabilities and mental health problems are enabled to access mainstream mental health services with support from specialist learning disability services as appropriate.


The guide is short and targeted at health-care professionals and commissioners who may not have much experience of learning disabilities.  It is approximately 50 pages long and includes practical advice as well as links to further information and references to other good practice documents. The aim is to make it as easy as possible for busy commissioners to find the information they need from one source.


The guidance details recommendations for commissioners following Winterbourne View. The recommendations include the need to be clear about accountability for commissioned services. Even if health commissioners delegate responsibility for commissioning services for people with complex needs, they remain accountable for the services they are paying for.


It will be important for health and social care commissioners to work together to improve local services for people with complex needs. Good channels of communication and personal relationships between CCG commissioners and the local authority are vital to stop commissioning mistakes, which will be costly both to individuals and to the CCG. This includes working with providers to develop good local provision and ensuring there are good specialist learning disability services including intensive response teams, to support providers. Out of area placements should be avoided where possible, not least because it makes it more difficult for family and friends to remain in contact.


Commissioners will also need to put in place robust assurance programmes including contract monitoring, which are not solely reliant on the Care Quality Commission.


There is considerable skill and expertise within some primary care trusts (PCTs) at present and emergent CCGs should harness this and develop networks with others in order to share knowledge and good practice as well as to monitor larger providers.


The guide was widely consulted on both as a first and a final draft. In addition, three CCG pathfinder groups who have been working with the Improving Health and Lives project and the Department of Health piloted the guide. For further information see: http://www.improvinghealthandlives.org.uk/areas/pathfinders. The pathfinders helped shape the document and highlighted good practice.
For example, the Nene Valley CCG used a commissioning in quality and innovation (CQUIN) to support improvement in both the quality of annual health checks and data gathering to inform commissioning.


Other examples of good practice include ensuring acute hospital learning disability nurses are employed to improve access to mainstream hospital services, training in mental capacity and use of the RCGP mental capacity toolkits. In addition, it will be crucial for commissioners to engage with local people with learning disabilities and family carers in order to understand their issues and needs.


The first step of the commissioning cycle is about patient and public involvement.Many areas still have partnership boards in place that bring self-advocacy and family carer groups together. As well as being an expert source of knowledge and experience, many self-advocacy and family carer groups can provide training and representation. CCGs should consider employing people with a learning disability to work alongside their staff.


In summary, commissioning services for people with learning disabilities is a substantial test of working together in effective partnerships and, through this, securing better health and support for local people while safeguarding this most vulnerable group of our population. There is lots of information and expertise already out there, and it will be important for CCGs to use this. If we get it right for people with a learning disability, we get it right for everyone.


The guidance can be downloaded from www.rcgp.org.uk/learningdisabilities or www.ihal.org.uk/publications where an accompanying presentation and easy read version can also be downloaded

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