NHS Continuing Healthcare - A Service Users Challenge

Peter Garside has shared with us his experience of caring for his wife Pauline, who passed away in 2016, and the difficulties he encountered in applying for Continuing Healthcare Funding. Peter wishes to share his story as a memorial for his beloved wife and in the hope that he can help others in similar difficult situations.

Age UK Cambridgeshire and Peterborough cannot comment upon the recommendations Peter makes in telling his story, but felt this is one worth sharing:

Reflections:

  “My wife, Pauline Garside, was diagnosed with Alzheimer’s disease in 2013, but we had coped with her disabilities and memory issues for several years.

  After a chaotic discharge from hospital with no promised care at home, we learned about continuing healthcare (CHC) and discovered we were eligible due to our level of need being complex.

  However, we came to learn that achieving CHC funding was not straightforward. In fact, we had to take the NHS to an Appeal Tribunal in August 2015…… read more on Peter’s website.

 Peter continues:

   “I asked myself what I could do to make life better for people living through what I had just coped with.

  With the help of a friend, I created a website, Continuing Healthcare from the NHS by Appeal, in the months following Pauline’s death.

  This includes a full reflection based on my experiences in arranging the care for my wife, titled Reflections on Making an NHS Healthcare Appeal for the Care of Mrs. Pauline Garside. My website would act as a memorial and provide guidance. I want to help people obtain CHC funding as the assessment procedure is far from straightforward.

  There are hundreds of thousands of people, young and old, caring for loved ones in their homes, often under intolerable levels of stress.

  For care home fees, there is a national standard for charging and for deciding who is responsible for paying. 

   Others have spent their life-savings and sold their homes paying for nursing home fees to look after their loved ones unable to cope on their own.

  Many of these people should have got CHC funding from the NHS, which is not means-tested. It is tested on the basis of 'need'. Alzheimer’s disease is a 'Primary Health Need', as was agreed by NHS in 2003. Thereafter, if the level of need is sufficiently advance, the NHS should provide a 'personal budget' to fund care requirements.

  There should not be any question of people funding the cost of care from their private savings, or via Local Authority funded social care.”

Visit Peter’s website and read his full story in the link beneath. It covers the initial assessment and care received and then how he managed to mount a successful appeal using the Decision Support Tool and to get a personal health budget to fund Pauline’s ongoing care.  There is also some advice based on his experience and a full copy of Reflections, available for downloading.

  In memory of Pauline Garside