Ben: I have Limb Girdle Muscular Dystrophy, and I’m 35 years old. I studied video editing at university, and have worked as a video editor for many years, my interests revolve around media.
CHC support
I’ve been receiving CHC support for over five years. I have a joint funded package between the council and the CHC. The CHC funds my waking nights and the council fund eight hours of day care.
There are two reviews a year. The CHC care review and the PHB (personal healthcare budget) review. I completely understand the PHB review because it’s necessary to check the financial records are correct. The CHC care review is the problem.
One size does not fit all
The lead up to the care review in terms of the impact on my mental wellbeing with the huge stress and anxiety it brings, is the issue. There’s not a scenario with a degenerative condition where you’ll turn around and say my care needs are less than they were last year, it’s never going to happen. There is always the fear, especially in the current climate, of them turning around and saying we don’t think you need this anymore so we’re going to reduce your care package. I can’t be the only one who is experiencing this mental stress.
To put someone through that every single year, where a month of your year is filled with worry and anxiety, when your care needs cannot have got any less, is a system that isn’t fit for purpose. When I’m doing a review, I have to go through the same set of questions where many of them are geared towards the elderly. The same form and process is used for everyone regardless of their situation. They’re trying to put everyone in the same box when one size does not fit all.
The process needs to be appropriate
I think for people with muscular dystrophy, an ongoing condition that will only deteriorate, the onus should be on them saying if they need more care, not for the CHC to come and decide do you need more care or actually do you need less. There should be a better system, the process needs to be appropriate to progressive degenerative diseases.
I understand there are times where you need to check in but why is there the need for a full, distressing review every year. The funding needs to be secure, why can’t there be a phone call once a year, asking,” do we need to reassess you this year” ….”no you don’t.” “Okay, brilliant, we’ll call you again next year.”
I question how much money is being spent on assessing people in my situation each year with nurses coming out and people doing the admin.
Reinforcing the negatives
Ben’s mother: It’s the actual process that’s damaging, we all find it intensely distressing. If you have any mental health issues, the fact that you have to go through everything you can’t do, intimate personal things. Going through the “are you bad enough for this category” questions and answering ‘yes I am’, reinforces all the negatives of your condition.
As part of the NHS, they have access to Ben’s medical records and his consultant’s details, they don’t need him to go through every detail. It’s hugely distressing and there is always the very real underlying fear that Ben’s care could be reduced or taken away and with this his independent life.
It’s not about the people who come out. We’ve had some really understanding people who've tried to make the process as good as it can be, but they are hampered by the process themselves. We’ve had mental health specialists come out. They know the impact it’s having on the individual, but they can do nothing about it because they have to follow the process.
It’s a flawed process, detrimental to mental health, and it affects everyone’s well-being, because there’s always that anxiety for the family and for the stability of the person’s independent life. It’s a very mentally damaging process for anyone, let alone someone who is already struggling with their physical and mental health.
Those without a support network
Ben: I’m lucky I can offset some of this stress and some of the difficulty onto my parents. I don’t know how I would deal with this if it was just me. I don’t know if I could always take that fight on. There are times when we have had to fight.
Not everyone is in my situation where they can offset that to someone else. I think for people who aren’t in my situation and don’t have that support structure around them, who don’t have people advocating and fighting for them, are going to lose out and are potentially going to be left with insufficient care and a much lower quality of life.
I’m going to have to justify my care for the rest of my life. I have concerns for people who don’t have that support network.
For support with CHC, Beacon offer 90 minutes of free advice. Alternatively, you can contact our friendly helpline team on 0800 652 6352 or info@musculardystrophyuk.org.