Guest blog: Continuing to care?

This guest post was contributed by Morgan Vine, Chair of the Continuing Healthcare Alliance, and Policy and Campaigns Adviser at Parkinson’s UK. 

My Nan lived with Parkinson’s and developed dementia later in her life. Luckily, we found a wonderful residential home which gave her the high quality, compassionate care that she needed.  – also known as NHS continuing care or NHS CHC – was never mentioned to us, despite Nan having incredibly high needs. Looking back, I think it probably should have been. But part of me is grateful that, as a family, we didn’t have to struggle through this complex and confusing process.

Now, as a Policy and Campaigns adviser at Parkinson’s UK, I am all too familiar with NHS CHC and how it is letting people down across England.

NHS CHC – What is it?

For those unaware of what NHS CHC is, in a nutshell it is free healthcare provided outside of hospital that is arranged and funded by the NHS. It may include paying for care costs typically funded by a local authority under the banner of social care, such as fees for a care home, but where these arise due to a specific health need.

In some parts of England it works brilliantly, enabling people to go on living as full a life as possible and giving support to their friends or family who are providing their care. But for others this is not the case.

Sadly, all too often people are not told about it, have their applications rejected due to incredibly high eligibility thresholds or inexperienced assessors, experience vast delays and are put through unnecessary reassessments. The situation is unacceptable.

Ann and Bill’s story

In my capacity as Chair of the Continuing Healthcare Alliance, which Age UK are members of, I have written a new report on how the system is working at the moment. As part of this research, I have spoken to people like Ann who told me about her experience of this system when applying on behalf of her husband Bill:

“Bill had Parkinson’s for 18 years and later developed Lewy-body dementia which resulted in regular hallucinations. He couldn’t stand and needed a hoist to move. To complicate things, he’d forget that his legs didn’t work, would try to stand and then fall over. I’d often have to call the ambulance when this happened. As his condition progressed, his ability to swallow deteriorated so I pureed all his food and fed it to him.

I paid for carers to help, but Bill’s needs were getting really severe and I got to the stage where I was cracking up.

During one hospital visit, the nurse mentioned NHS CHC. I’d had never heard of it but agreed we should apply.

We had several assessments. During one, the assessor was really rude. She kept asking me for written evidence to prove that what I was saying about Bill was true. I felt about two inches tall and our application was turned down.

During another assessment, though the assessors were more compassionate, they said I was looking after Bill too well and he wouldn’t qualify.

The last few months of Bill’s life were really awful – we were both in a very bad way.  About a month after he passed away, I received a letter saying he may now be eligible for NHS CHC. The letter asked if I wanted to do retrospective claim. I agreed, but it’s been going on for over a year now and I still have no answer.

I know it can be different depending on where you live, and who does the assessment. Bill’s brother also had Parkinson’s and after telling my sister-in-law about NHS CHC, they had an assessment and were awarded NHS CHC immediately. This meant for the last 9 or 10 weeks of his life he had carers every day, and was given special equipment.

I understand the heath service is in financial trouble but I was in a desperate situation. Surely it cost more to have Bill in a hospital bed than to pay for us to have care at home, or even for him to move into a care home. Getting NHS CHC would have made such a difference to us in the last few weeks of Bill’s life”. 

Watch an animation of Ann and Bill’s story here.

It’s unacceptable that Ann was left in such a distressing situation, while spending every hour caring for her husband. She isn’t a medical professional and she has no training or knowledge of how to care for someone with the complex needs her husband developed. She needed some help to allow her to maintain her own well-being, as well as enabling her to spend as much quality time with Bill as possible during the end of his life.

What you can do

We are running a campaign to improve this system, and need as many people as possible to support it. Please take two minutes to share our new report with your MP and local clinical commissioning group. Just visit

Need help?

If you need information or advice, Beacon provide free consultations of up to 90 minutes with an independent NHS continuing healthcare adviser. This is funded by NHS England. They have also created a free ‘Navigational Toolkit’ to help people navigate their assessment or appeal.

For more information, visit Beacon’s website or call them on 0345 548 0300.



Author: Age UK

Age UK is dedicated to helping everyone make the most of later life. In the UK we help more than 7 million older people each year by providing advice, combating loneliness and enabling independence. Locally, we work as part of a network of independent charities which includes Age UK, Age Cymru, Age NI and Age Scotland and over 150 local Age UK partners in England and Wales.

2 thoughts on “Guest blog: Continuing to care?”

  1. I have been helping and advising individuals and their families on the procedures that should be applied when someone is assessed for NHS Continuing Healthcare (CHC) over many years now. However, I am no longer surprised at the level of assessment errors that take place which can stem from poor interpretation of the DOH guidelines by the assessment teams, whether out of ignorance or willful intention to deny eligibility. Experience has shown that problems start when an individual is denied access to an IMPARTIAL coordinator where a person requires full consideration for NHS CHC. Some CCG’s claim that the national framework does not exclude the possibility of a member of the multidisciplinary team (MDT) also undertaking the role of the coordinator, which means that they are part of the decision making process. Their claim is based on them having significant practical difficulties in convening a properly constituted MDT. However, this is contrary to the framework page 70 (Para 26.2 h), and the “Guide for Health and Social Care Practitioners” page 14 which both claim that the coordinator should act as an “Impartial Resource” to the MDT and the individual and / or their representatives undergoing the assessment. If you or someone you know has experience of this flawed practice by your CCG you will probably find that they become seriously disadvantaged and left without the correct support that they are legally entitled . It should be noted that the national framework for CHC and its associated tools are underpinned by legally binding directives and standing rules.

  2. I have now written to over 60 legal practices and many other similar organisations to ask whether my 35 year old daughter by adoption, who has profound and complex disabilities requiring constant care throughout every 24 x 7 x 52 and is under palliative care, could challenge issues about the way our Personal Health Budget for her is administered by the Gloucestershire NHS CCG. I have been caring for her at home for 34 years. Of those who have responded to my enquiry not one is either willing or able to offer assistance.

    I have been led to understand by a Social Enterprise Organisation providing free advice for families dealing with NHS and CCG funding issues for relatives with long term illness or disability that Gloucestershire is not complying with the legislation and which is avoiding acknowledgement of my two letters of formal complaint. We do not have the finance or income to avail ourselves of the full services of the advice service mentioned.

    It appears that there is not one single person of authority anywhere in the UK who will offer direct support to this fragile and vulnerable little person.

    We are desperate.

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