Real stories

Our experience with NHS Continuing Healthcare funding: Peter's dementia story

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 NHS Continuing Healthcare Funding (CHC) and discovered we were eligible due to our level of need.

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.

We won the appeal at the tribunal and the CHC funding was provided. Not only that, it was backdated to the original application date, covering all expenditure incurred over the previous year. 

The service we received was excellent. We got everything we needed very promptly with a high level of personal attention and courtesy.

Pauline sadly died very suddenly in February 2016. The NHS did not accurately diagnose her terminal health condition until a few days before her death.

As CHC was in force, we had been upgraded to full around-the-clock hospice arrangements at home. This meant Pauline had a peaceful death where she wanted, surrounded by love and care.

Getting the right continued care

After Pauline’s death, I had more time to reflect on the often chaotic nature of the healthcare system in our country.

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

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 NHS Continuing Healthcare funding, 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.

There are thousands of people blocking beds in NHS hospitals or living in expensive nursing homes. This is because effective care in their own homes isn't readily available for everyone.

A hospital bed costs around £850 per day. Yet, NHS CHC funding can provide 24/7 cover at home for around £1,000 per week (at current prices).

I believe the NHS could save money if there was joined-up thinking between hospitals and care in the community. CHC should provide all the funding for people with advanced Alzheimer’s disease, as well as countless other medical conditions.

Campaigning for effective continued care

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, which is available to download.

My website would act as a memorial and provide guidance for others in similar situations. I want to help people obtain CHC funding as the assessment procedure is far from straightforward.

The NHS would deny CHC funding is rationed. However, I believe there are a huge number of eligible people not getting this valuable benefit. This is likely due to limited NHS resources, and their lack of preparation ahead of assessment meetings.

Not giving up the fight

Within a few weeks of publishing my website, Alzheimer’s Society used it as a referential example of a personal account from someone who was refused CHC funding and appealed against the decision. Many thousands have visited my site.

Hopefully, sharing my story is doing a lot of good and people are obtaining their right to professional, long-term care for loved ones.

Sharing my experiences is an ongoing task. I will not give up until every eligible person in the country with Alzheimer’s disease is in receipt of their rights to NHS-funded care. The battle was won by Barbara Pointon in 2003, whose website helped and encouraged me enormously.

We need now to tell everyone in the country there is help available if you know how to get it.

Advice from Alzheimer's Society

Alzheimer’s Society continues to do all it can to influence government policy. We are aware that people living with dementia are very often unfairly excluded from accessing NHS continuing healthcare (CHC).

A diagnosis of Alzheimer’s or indeed any type of dementia does not carry automatic eligibility for CHC, as much as we would like it to. Eligibility for CHC funding is never ’condition specific’. It relies upon identifying the person’s needs in line with the criteria laid out by the Department of Health. We would argue that many people with dementia should be eligible for CHC. If the test for a ‘primary health need’ was carried out appropriately in the assessment, more of them would be found eligible for this funding.

However, it is a flawed system and until government policy changes, it is all we have to work with.

We would suggest that the best way for people to access NHS CHC if they think they are eligible or they represent someone who they think is eligible, is to inform themselves fully of the CHC criteria, before the process starts. Read and prepare as well as you can. Gather evidence required to support your argument and understand what information and support you are entitled to receive from the CHC team, who are carrying out the assessment.

Alzheimer’s Society’s publication When does the NHS pay for care? has information and tips to help.

Next steps

• Visit Peter's website to learn more about his experiences.
• Join our campaign to demand the Government Fix Dementia Care.
• Download the Department of Health's booklet, NHS continuing healthcare and NHS-funded nursing care.
• Learn more about understanding and caring for someone with dementia, with tips on how carers can look after themselves too.