Issue - meetings

To obtain the views of relevant voluntary sector organisations and local patient representative organisations on:

§         The accessibility of primary healthcare for people with learning disabilities (LD) and, in particular, people with profound and multiple learning disabilities (PMLD).

§         How the health and well being of people with LD and PMLD could be improved.

The Panel received evidence from Alex Hendra from the Markfield Project, Richard Taylor from MENCAP and Helen Warner and Dolphi Burkens from the Patient and Public Involvement Forum for Haringey PCT. 

The Markfield Project

Ms.Hendra stated that her organisation was primarily concerned with the provision of leisure and recreation opportunities for people with learning difficulties and therefore most of her comments related to this rather then directly to health care.

There were some examples of good access to recreation and exercise for adults with learning disability (LD) but these were not necessarily accessible to people with profound and multiple learning disabilities (PMLD).  Some Markfield users had reported using leisure centres for regular exercise assisted by support from their key workers but people with more profound disabilities seemed to have less access to this kind of facility.

There were some specialist recreation services commissioned by the Learning Disabilities Partnership such as Markfield’s Art Engine and Markfield at Nite Projects but the number of places available for people with PMLD and high support needs was limited.  Day centres also provided a range of recreation activities for adults with LD.

In respect of children with LD, Markfield were able to give more detailed evidence on the lack of access to recreation and exercise as they had been commissioned to undertake an audit of supervised play provision in March 2006. This had found that, despite DDA requirements to make services accessible to disabled people, access to play and youth provision within the Borough was severely limited for children with disabilities.  Many providers, including six local authority run centres, were physically inaccessible to children with mobility difficulties. There was a severe shortage of play places for disabled children – for example, there were only enough inclusive places for half the number of children registered as disabled within the Borough. There was a particular shortage of term time places for disabled 3-12 year olds with a sum total of only 59 places available across the whole Borough.  When children were offered holiday play provision, it was for shorter amounts of time than for their non-disabled peers and term time provision was often only for one day per week, as opposed to the full time places offered to non-disabled children.

Markfield were commissioned by the Children’s Service to coordinate places for disabled children for the summer play scheme in 2006. In doing this, they discovered that the average amount of provision for a disabled child was two weeks across the summer holidays as opposed to five for non-disabled children. There was also a severe shortage of places: they were able to identify only 103 disabled children who received a play scheme service.  This was only just over half the number of places providers said they hoped to provide when questioned in the play audit in March 2006.  There were 112 disabled children identified as needing a play scheme service who were not allocated any provision at all over the summer.  39 of these were referred by Social  ...  view the full minutes text for item 18

To receive a scene setting presentation from the Head of Haringey Learning Disability Partnership including:

·               How the partnership works

·               Definition of PMLD

·               Health issues and how they affect people with LD

·               The role of primary health care

The Panel received a presentation from Gary Jefferson, the Head of the Learning Disability Partnership, on the nature of learning disability and how health issues impacted on people with learning disabilities.

He stated that the Partnership was funded under what was referred to as a Section 31 agreement.  This meant that the money from a number of different agencies was pooled in order to provide particular services.  The services that comprised the Learning Disabilities Partnership were Social Services. Haringey PCT and Barnet, Enfield and Haringey Mental Health Trust.  The amount that each agency would contribute was agreed at the beginning of the year.  Once committed, the money could not be withdrawn.  If the budget was overspent, each partner was liable.

The majority of learning disability services were now partnerships.  In some case, this might just mean that they just shared the same premises, but the Haringey service was completely integrated and covered all aspects of the health and social care of clients.

People with learning disabilities were involved in the governance of the partnership, with representation on the Board.  Linked into the Board, were a number of forums with one each for carers, service users and voluntary sector partners. 

The partnership used the following definition of learning disability;

 “A significantly reduced ability to understand new or complex information, to learn new skills (impaired intelligence), with a reduced ability to cope independently (impaired social function), which started before adulthood and has a lasting effect on a person’s development.”

This was the one used by the Department of Health in its “Valuing People” document on the provision of services to people with a learning disability.  Learning disability was not a condition that people obtained in later life – its onset was before the age of 18.  IQ was generally assessed as being below 70. There was some debate as the whether conditions such as cerebral palsy and autism were in fact learning disabilities.  However, the term normally included Downs Syndrome and a number of other conditions.  In addition, there was debate whether the generic term should be learning disability or learning difficulty. 

There were currently around 1,000 clients known to the service and they varied considerably in the level of needs that they had.  For example, some clients only needed assistance for a short period of time once per month whilst other people could require assistance from two people around the clock.  Profound and Multiple Learning Difficulties (PMLD) generally referred to people with the highest levels of need. The service worked with people who were in residential care as well as people who needed continuing support but lived at home.

People with PMLD generally had lower levels of IQ coupled with some sensory loss and/or physical impairment.  There were often particular difficulties with communication.

During the past decade, life expectancy had improved for people with learning disabilities.  For example, people with Downs Syndrome had generally lived until their mid forties but were now living until their early to mid fifties.  The oldest  ...  view the full minutes text for item 11