My husband was diagnosed at the start of November.
It would appear he’s had PD for many years only the symptoms could be explained by other things.
He had a spinal injury, pulling up plants at elderly parents, and tremor appeared at same time. That was ‘put right’ a few years ago & tremor attributed to PTSD only it clearly wasn’t.
He doesn’t need a huge amount of support yet but in recent poor weather I’ve taken him to work rather than him driving, I have to take charge of some things or he’d forget to do them and that includes making him eat as medication has suppressed appetite. Although I haven’t been able to attend medical appointments due to COVID restrictions- I’ve provided copious notes to support & taken him to hospital appointments for diagnostic tests etc.
I am a part-time secondary teacher working over 5 days. He, thankfully, left the classroom 3 years ago when redundancy was offered & now works in a supermarket having down shifted. They’ve been fantastic.
What I want to know is am I technically a Carer? I don’t really regard myself as one but someone at work said I should inform management as I would be entitled to certain rights. I’ve started looking into this tonight & got bogged down. I wouldn’t be entitled to any payment/benefits but would I need to be assessed? CN I just register at Doctors & Work?
Do I do enough to be classed as Carer?
Advice & answers appreciated.
Thanks
Jo
Hi @JoDav,
Welcome to the Parkinson’s UK forum.
It sounds like you and your husband have had a rough few months with a lot of changes which would be hard for any newly diagnosed person with Parkinson’s. In light of what you’ve shared about some of the responsibilities that you’ve taken on since your husband’s diagnosis, it was appear that you are technically his carer. However, there is no obligation to tell your employer about your responsibilities as a carer. But carers have statutory rights at work that help to meet their needs. And employers may also be able to offer additional flexibility through their own policies and procedures.
We have more information on carers rights at work as well as the support available to carers via the Parkinson’s website here: https://www.parkinsons.org.uk/information-and-support/caring-while-paid-employment
Given that you’ve been feeling bogged down with the information that you’ve sought so far, I’d encourage you speak to an adviser via our free and confidential helpline on 0808 800 0303. They’d be more than happy to speak to you about this in more detail.
I hope you find this helpful.
Best wishes,
Reah
Forum Community Manager
Hi @JoDav
Hello Jo, in my opinion the answer is a definite yes. You can register as your husband’s career at the GP surgery. It is a confusing minefield but un-paid careers (my wife is mine) are not always recognised. However, you may find GP disagrees. In that case point them to JCVI advice on priority groups published on 30th December 2020. Contained within priority group 6 (which includes PD), towards the end it states clearly;
Other groups at higher risk, including those who are in receipt of a carer’s allowance, or those who are the main carer of an elderly or disabled person whose welfare may be at risk if the carer falls ill, should also be offered vaccination alongside these groups.
From the part it says, or… that means quite clearly unpaid carers if you are the main carer and if you became ill the PWP welfare may be at risk.
In my case the request was initial denied at the beginning of December however, when I emailed them a copy of the JCVI advice dated 30th December they reversed their decision and my wife (52 years young) was given her vaccination at our GP surgery on Wednesday when I was given mine.
For full disclosure I add that I also have a chronic spinal condition, but this should not alter the advice from the JVCI dated 30th December as it does not say multiple underlying health conditions it just states underlying health conditions.
There is also legislation which covers unpaid careers who are often overlooked and taken for granted but also taken advantage of in my opinion.
Hope this helps, best wishes John
Hello Jo
I too would say categorically yes. I am an unpaid (sole) carer for my Husband who has Parkinson’s Disease. It is sensible to inform your GP and if you have a local
carer’s support forum register with them also - I don’t believe you need any assessments to do so. I have cared for 5 years now but until last year also still worked but gave up working last year as my husband had lost the ability to stand and walk, coupled with ongoing Orthopaedic problems necessitated my having to be more available to him. He is in his 70s and myself in 60s. I would have liked to have continued working but as I also care part time for my 91 year old parents I couldn’t physically do it all.
My local County Council Support Forum for careers is active and supportive and also recommend Parkinson’s U.K. helpline snd information.
I found John’s comments above interesting, I asked my GP’s if as carer I was able to have a Covid Vaccination at the same time as my husband and I was refused.
Take Care best Wishes
Jane