Creating Circles of Support for people with learning disabilities

Tuesday, 3 February 2009

My contribution!!!

I work as a learning disability nurse at a Nursing Home, in the East Riding of Yorkshire.
This is part of the Spice Trust, and is a registered nursing home for people with learning disabilities and complex needs.
Care at the home is delivered by the Humber Mental health teaching NHS trust, in conjunction with the East riding of Yorkshire council as a section 31 agreement.
The majority of the people who live at the home require maximum assistance in most, if not all aspects of their everyday life.
For example, people often have difficulty with communication, with eating and drinking, with continence and in maintaining their personal hygiene, and because of people’s physical disabilities in mobilisation.
People with profound and multiple learning disabilities are known to have more complex healthcare needs than those of the general population.
Those conditions which are known to be more prevalent include mental health problems, epilepsy, visual and hearing impairments, thyroid dysfunction and skeletal malformations caused by conditions such as osteoporosis.
This said, people with learning disabilities, and particularly those who have profound learning disabilities continue to remain quite isolated with regards to health action planning.
These health inequalities may be largely due to a number of barriers that currently exist for people with learning disabilities.
One of the main barriers we’ve found, in developing person centred health action plans - is with communication difficulties, which affect a large proportion of people who have profound and multiple learning disabilities.
A person’s health status can very easily become compromised, because someone may lack the ability to recognise that they are unwell, or if they can, they are often unable to communicate this to their carers or to the people around them, and get the treatment or support that they want.
So a person with profound learning disabilities is often totally reliant on their carer to access healthcare and get the treatment they require - and because of this health problems all too often go unrecognised.
Over the past 2-3 years or so, we have been working extensively with individuals, in developing channels of communication in attempt to reduce these barriers and tackle the health inequalities.
The introduction of individual communication charts has been really useful in developing these channels - enabling us to begin to understand how people are communicating to us, and anticipate what an individual is attempting to say.

Using this knowledge we’ve been able to move forward, and were now beginning to develop person centred health action plans that are both meaningful and appropriate to meet the complex healthcare needs of individuals at the home.
People are actually beginning to make choices and decisions about how they live their lives - these might be small decisions – but ultimately big decisions are the outcome of small decisions - so choosing what to wear, or where to sit, or what you want to eat for breakfast, may seem insignificant from our point of view – but these small changes are beginning to make people feel more effective and in control of a manageable part of their lives.
Carers are now more able to focus on specific areas of the person’s life, and recognise the interface between a person’s health and the rest of their lives, so actually consider from the person’s perspective, what good support looks like, and what they need to do in order to link people to the services or treatment they need or provide the appropriate support.

Because Information and planning are often not accessible to service users, (particularly those with profound and multiple learning disabilities). There is often the possibility that they may begin to feel at a disadvantage, or even feel left out of the whole planning process.
So a lot of our work has revolved around making information and planning more accessible and the active involvement of individual’s in the assessment of their own health needs is being optimized by using clear language, illustrations, and digital photographs in order to depict specific areas of the persons life.

In addition to the paper version of the person centered health action plans, we have also been developing and implementing approaches to individual multimedia profiling.
This is a process which creates a personal catalogue of video clips, digital images, graphics and audio on the computer which build up a holistic profile of an individual. The person could, if they were able, be in control of their own information through switches or touch screens, and could choose when and how to share it with others.
So Multimedia Profiling makes information easier to share. And what were hoping is that as this develops it could be used to support people in becoming more independent, getting the support and care that they want, linking people to and accessing the services that they need.,
Ultimately, people can begin to feel involved and more in control of their lives.
In order to develop all the work we’ve been doing and move things forward with regards to person centered approaches and health action planning were concentrating on staff training programmes – we are currently in the process of delivering training workshops across the Spice Trust, for all staff - which is focusing on working with person centered approaches, developing communication skills and intensive interaction, also giving staff and carers the skills to enable health facilitation for all people with learning disabilities..

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