Stopping Work

[RobertV]

Hi. I have had symptoms for many years and was diagnosed with SCA2 last year. I am still working but finding it increasingly difficult. To be fair, my employer has been brilliant and lets me work from home when needed. I'm only 47 and cannot see me being able to continue work until (if I can) early retirement at 55. If I have to give up work, any idea where I will stand regarding benefits ? I had a PIP consultation with someone from Atos earlier this year and I (back in Jan) didn't qualify for a PIP payment. Any advice appreciated.

[Floramac]

Hello....I am in a similar situation . I have increasingly had more falls at work and am currently sick from work since June this year. Am looking at re deployment early retirement etc...I am 41. I have also applied for PIP. Would you be able to tell me why they felt you did not qualify for payment.

I find it all very frustrating but know I am not fit to be at work. Recently had fall dislocating my shoulder..... Best wishes to you.

[RobertV in reply to Floramac]

Hi. Because their qualification criteria is a joke. I can dress myself and feed myself and (back in Jan) walk a short distance. I now would struggle to make this distance - I told them that but they told me to reapply for PIP when I get worse. Despite having a letter from a world authority neurologist proving I have a progressive illness. Joke.

[Floramac in reply to RobertV]

It certainly is...I also am able to dress feed etc it's the mobility part of PIP that is more relevant .

[Dressy6]

Hi Robert. My mum was recently diagnosed with SCA2 back in January. She is 58 and worked most of her life up until about 3 years ago as my Dad was then ill. Her symptoms only really came about noticeably 2 years ago. Before that she was just always quite clumsy! We think it might have been the stress of my Dad being ill that exhasperated the symptoms a bit quicker, but l who knows.

She is on benefits and as far as I know has no problems getting these. I'm not sure what her benefits are called so I will check with her.

Do you have any family history of ataxia or SCA2? Mum's diagnosis was so out of the blue. Anyway, hope you are keeping well! Mum finds keeping active the best thing as well as a positive outlook.

[RobertV in reply to Dressy6]

Family history I'm afraid. I have a sister who was lucky. I was not so lucky.

[Jay1972]

Hi Robert.

I also suffer with SCA2 and am 42 years of age. I work in a demanding role at management level and I have increasingly found that I am struggling in this role. My employers have been brilliant and have reallocated most of my work to a colleague (they actually promoted someone on a secondment to assist me). I am in the process of taking ill health retirement and this should be resolved before Christmas.

Like you, I have always worked and prided myself on not only providing for my family, but felt that I was a good role model for my kids and established a good work ethic in them. The fact that my working life may soon be at an end is a dismal prospect, but I always think health above wealth!

In terms of your PIP, you can appeal the decision (although I would guess that if this was back in January, you would need to reapply). I would suggest speaking with CAB or searching to see if there are any charities in your local area to help disabled people complete forms etc, you need to be totally honest about how the condition affects you - I can dress myself most days but if there are buttons involved, I need help! Also, get your GP and Neurologist on side - their support is going to be crucial.

Apply to your local council to be registered as a disabled person too as I think this sometimes helps.

I was adopted and I did manage to trace my natural mother. She died in her early fifties and had been diagnosed with MS - turns out that she more than likely had SCA2 misdiagnosed (SCA wasn't invented back then!) and that is where mine stems from!

All the best Robert!

[RobertV in reply to Jay1972]

I'm just unsure where I will be financially should I have to give up work soon. I will have to re-apply for PIP and still am not confident (as I have a pulse) I will pass their acceptance criteria and qualify for any payment. I don't think I can draw a state pension until 60-odd - that's a given isn't it ? I can't get JSA as I'm not JS. Any other benefits - are they means tested ? (I don't particularly want to spend my life savings because I can't work). I'm not sure how 'ill health' early retirement works - can someone please explain ? I have a pension pot that will struggle to last for me if I retire at 55, let alone before. Thanks.

[Jay1972]

I work in the public sector and am a member of the local government pension scheme.

Under this scheme, if I retire through ill health (which must be confirmed and agreed by an Independent Medical Practitoner - Ill Health Retirement is costly for employers) my employer will add the contributions that they would have paid up until my normal retirement age and I will receive a lump sum, and a yearly pension as if I had retired at 65, when I will actually be retiring at 43.

Of course, Pensions are all different, so my advice is that you speak to your Union, HR department or Pension provider to find out just what your options are. And I certainly would not put your cards on the table until you have all the facts!

This does mean however that my income will be greatly reduced but I may then become eligible for further benefits dependent upon household income and individual circustances.

In terms of re-applying for PIP, get advice! In Hertfordshire (my home county) there is a charity call Hertfordshire Against Disability and they have a dedicated benefits advisor. Check and see if there is anything similar in your locality as they can often help you complete the forms and provide some guidance on what they think you'll be entitled to.

Once you have all your facts, you can use sites such as this one; gov.uk/benefits-calculators to find out what else you may be entitled to based upon your projected circumstances.

Most of all - talk to your family. Keep them in the loop and they will be an invaluable source of strength. You need people to support you and for you to bounce ideas off.

If I can help any further, please let me know. And good luck.

[Alip-j]

I think the rules of PIP are ridiculous.My partner has sca2 and is 46.He like yourself is working but really struggles.If he ends up giving up the job then god help us.