In 2013 St Anne’s Community Services were approached by the Clinical Commissioning Groups in Kirklees, West Yorkshire to produce a package of materials to support people with learning disabilities, their families and support staff to recognise and manage health issues and enable them to plan for changing health needs.
We set up a project team made up of a range of people with the right skills.
Our team was led by an area manager with personal experience of supporting people with learning disabilities both as a professional and as a family carer, specialist nurses who support people with learning disabilities who also have complex health needs, a specialist trainer and front-line support staff. This gave us a breadth of knowledge and experience to draw upon.
We consulted other professionals and had our work peer reviewed by the local Kirklees Hospice – Kirkwood and various other providers and specialist GP’s.
We are proud to say the result of the work is “Doing It My Way”
Doing it my way is referenced in the NHS England publication Delivering high quality end of life care for people who have a learning disability. We appear on page 24.
We have a comprehensive range of guidance documents and suggested support planning tools, we have communication guidance and our film which is an honest and powerful reflection on why we worked so hard to produce My Way and why it could well be a great package for all providers of support to people with learning disabilities to use.
We created “POLE” which is our “Probabilities Of Life Expectancy” guidance which supports the person with learning disabilities, their family and support staff to recognise and reflect on their health. We know from a growing body of evidence that the experience of health may well be different for people with learning disabilities and using POLE provides a unique, bespoke way of assessing the needs of the individual on an ongoing basis including end of life support. Our POLE guidance supports the person receiving support and their whole circle of support to understand the impact health conditions may have. It promotes strong advocacy when supporting someone to get the right support at the right time and encourages everyone to understand the impact a health condition may have so that everyone knows what might happen and can plan before a crisis happens.
Our experience is that even when facing the most complex health conditions and having an illness that the person cannot recover from talking and planning makes the journey, however tough, more bearable as there are fewer crises. Care is delivered in a planned way and the person’s circle of support know what to expect and can prepare themselves so they are able to support their relative or friend with a learning disability and each other at this saddest of times.
How to purchase
We can provide our excellent guidance documentation and our film.
We can also provide training which is invaluable in enabling the implementation and cultural embedding of My Way.
How to contact us
For more information please complete an Initial Enquiry Form or you can get in touch using the details below:
Marnie Walker at firstname.lastname@example.org
Nicky Lyall at email@example.com