Kate Harris has applied for CHC Funding three times. The third attempt was finally successful. Here Kate share details of her experience of caring for her husband of 19-years, Jim.
Funding full-time care for a loved one can be stressful and expensive. Financial support is available, but not always easy to access. A lack of awareness of PSP & CBD among professionals can exacerbate the challenges associated with applying for support including Continuing Healthcare Funding.
“Jim’s journey started around five years ago. Increasing unsteadiness on his feet, falls, and speech difficulties led to a diagnosis of Parkinson plus during Covid. The lockdown meant there was little help or support available, only a prescription of Parkinson’s medication.
“It was unfortunate that once the COVID vaccines were available, Jim had a bad reaction which affected his spinal cord. Over the next 18 months this intensified his symptoms, which turned out to be an overlap of both PSP & CBD. During this time Jim lost all mobility and became doubly incontinent. With no friends or family nearby, I was unable to look after him at home alone and had no choice but to find a live-in care facility for Jim, four miles away.
“Jim has been living in the care home for the last two and a half years, where he is largely confined to his bed, particularly in this last year. We have had the stress of self-funding this because his condition just seemed to fall under the care radar. To date the cost of care has tallied up to around £120,000.
“Feeling a bit helpless about the situation and knowing Jim’s saving would eventually run out, I spent large amounts of time searching online about PSP & CBD. I was keen to learn as much as I could about the conditions, but also the support available. It was through this research I learned about CHC Funding.
“With Jim immobile and doubly incontinent, needing around the clock care, I thought applying would be straight forward. But I was wrong. Twice my application was refused.
“In the applications, I would detail the extent of Jim’s conditions. Specifying that his legs are totally rigid and immobile, now his arms are progressing in the same way, so he can’t move any part of himself unaided. As a result of his mobility problems, Jim cannot eat unaided, I visit every day and I feed him most meals, sometimes the staff will help him with his breakfast. He regularly contracts UTI’s, bed sores and chest infections, so the nurse practitioner is always writing scripts for antibiotics.
“Jim’s speech is also now affected, so communicating his needs can be extremely difficult. And although he can have moments of clarity, which can surprise the both of us, his cognition is largely impaired too.
“Stressed about Jim’s dwindling savings, I ensured I read every word of the 189-page guidance document on the NHS website ahead of my next application attempt. I wanted to ensure I was as clued up as I could be about the process and what different terms meant, in the real world. I then submitted my third CHC Funding application in February and for the third time someone came out to assess him
“In March, we finally had a positive outcome. We have been awarded funding to cover his care fees going forward. The only difference between this application and the previous one, was that Jim could no longer hold a spoon to feed himself.
“Looking back, it feels like Jim was discriminated against because he didn’t fit under the better-known banners of Alzheimer’s or dementia. Despite his despite longstanding issues with his mobility, it seems only now he cannot use any limb usefully, and his cognition has declined, that they’ve taken notice. It feels like because his vital stats have always been healthy, despite various infections, he didn’t tick enough boxes.
“During the two and a half years Jim has been living in the care home, I have exhausted myself trying to explain to staff and visiting nurses, how PSP & CBD differ from Alzheimer’s and dementia. Even hospital staff have lost interest, so his diagnosis remains listed as ‘likely to be PSP & CBD’ which is infuriating. Awareness of PSP & CBD and how the professionals can best support Jim will be an ongoing battle. I will keep plugging away with the care home staff, to ensure Jim receive the best care possible.
“It’s been a stressful and quite isolating experience, but I cherish the six-days a week I spend with Jim.”
If you are looking into CHC Funding, here Kate provides some handy tips to consider when completing an application:
- Use the government’s Decision Support Tool to review the criteria and questions relating to CHC Funding gov.uk/government/publications/nhs-continuing-healthcare-decision-support-tool
- Read through the NHS 2014 CHC Funding guidelines for all care situations or contact PSPA Helpline for guidance gov.uk/government/publications/nhs-continuing-healthcare-and-nhs-funded-nursing-care-public-information-leaflet/public-information-leaflet-nhs-continuing-healthcare-and-nhs-funded-nursing-care–2
- Answer all the questions in the application honestly, referring to the days when your loved one needs more assistance with their daily living
- Primary healthcare needs are not just about mobility restrictions. Assessments will consider all parts of daily life including personal hygiene, feeding, breathing, etc, so think about all the support you or a carer provide when completing the form
- Ask PSPA’s Helpline for a CHC Funding support letter which helps to explain symptom progression and care needs for people living with PSP or CBD
- Aid understanding of the conditions by providing the CHC Funding assessor with information leaflets about PSP & CBD.
