I’m Jonathan aged 50. In 2007 I was diagnosed with Polycythemia Vera after spending a week in hospital. I was told that this could lead to a stroke or heart attack later in life. I had a TIA in 2012 and life has been awful ever since. Usually symptoms clear up in a day or two but I’ve had nerve damage on my right side ever since and it’s horrible. It’s like having a python wrapped round that side crushing you and the more you have to use that side the more intense it gets. Now the job centre are threatening to stop my benefit because I’ve not been to hospital for a couple of years so there can’t be anything wrong with me. I’ve been having blood tests locally since 2007 every 6-12weeks and if the blood was at a certain level I’d go to hospital for treatment which was a venesection. They said I’d missed an appointment so I’ve been discharged. So I’m at a greater risk of having another stroke or heart attack. Trying to get referred from a doctor to start the process again is virtually impossible. I’m feeling like I’d rather have another stroke and die but knowing my luck I’d probably be a complete vegetable which is worse than death.
Hi @Jonathan50 and welcome to the forum
I’m so sorry your post seem to been overlooked and for 10 whole days, that’s just so unusual on here.
I’m afraid I don’t have any advice for you myself, but there are several members on here with CPSP you will find in the post links below who share similar experiences with it.
And @KGB put together this useful post which may be of interest to you.
You could also seek advice from the Citizens Advice and there is also the Stroke Association helpline 03033033100 Helpline
I hope you find something helpful in amongst the above links And hopefully now that one member has finally responded, more will be along soon. Take care.
Hi @Jonathan50 welcome to the forum & I too am sorry your post has been missed. It is extremely rare for that to happen.
I’ve never heard of Polycythemia Vera but the symptoms you describe sound awful.
I wonder if you would be able to get a letter from your GP that you could send to the job centre. It is not unusual, especially in the current climate, for people not to see a specialist for a long time for a condition that they have to live with long term.
The Stroke Association helpline might also be able to offer you some advice & it could also be worth getting in touch with citizens advice as they have prople who know a lot about benefits.
I think the doctor who diagnosed me was sending the JC sick letters because I started to receive disability benefit in 2014. This stopped in 2016 when the doctor unfortunately died playing golf one day. I received a letter from the DWP saying I may not be fit for work at the moment but could be in the future. But that’s assuming my blood condition & nerve damage will clear up, WRONG. My blood disorder can’t be cured only managed & the nerve damage I’ve got for the rest of my life.
Very sad that your GP passed away but that shouldn’t affect your benefits or treatment plan. The DWP do review thins every so often so this may be just a review. A few things you may want to look into:
Have you been assessed as having limited capability for work by DWP?
If you are having no luck seeing your GP try contacting your practice manager & ask them to sort it.
Could you get a letter from the hospital explaining your conditions?
You could contact your local MP for assistance too.
The Citizens Advice are a great place to start as they can offer advice and support on a lot of things. If you have an Indpendent Living Centre in your area they might be able to help too.
Thanks Ann great advice. It’s not that I’m lazy or don’t want to work as I pretty much worked solidly from the age of 14-36. But if I had to employ someone it wouldn’t be a person the wrong side of 50 with serious health issues but the JC don’t seem to understand this.
I think the vast majority of people who are unable to work would give anything to be able to work. Sadly the small minority of people who don’t want to work make it more difficult for the rest of us.
And hopefully now that one member has finally responded, more will be along soon. Take care.