Entitlement to any form of financial support


A big welcome to all readers; although diagnosed three years ago, I have only recently come to recognise the true extent of the disability I am experiencing, including common fatigue, mental fuginess, tremor,  left arm freezing, and common left sided incapacity. In light of my symptoms, I realise I can no longer work in the profession that has kept me busy for ~ thirty years, and would like to take early retirement. I realise that, at 53yrs, I am ineligible for any state pension. I have always been self employed, paying a little money into a personal pension fund, from which i believe i can withdraw sums at 55yrs..i.e in 2019.  Until that earliest date, I am right, am I not, to believe that my only routing towards getting any financial help is through applying for elements of 'universal credit/PIP'. If this is the case, i believe that means testing immediately kicks in, and that I'd not be offered any government assistance if I had accrued savings in excess of some sum, like £16,000 ?...could anyone confirm, as I know i have been fortunate to have accrued more than?  Thanks  


Hi Spitz, 

I'm sure you'll get lots of input from other members. Until then, I thought this information about Universal Credit would be helpful for you: https://www.parkinsons.org.uk/information-and-support/universal-credit.

We also have a general information sheet about money, grants and benefits at: https://www.parkinsons.org.uk/information-and-support/money-grants-and-benefits

I hope your retirement plans work out well.

Best wishes,


Moderation Team


I was diagnosed in August and have been off work since, suffering with the symptoms and have no meds that are giving me any relief (currently on Rasagaline 1mg). I do have a consultant appointment o saturday which will hopefully change that. I have pondered the work thing, I don’t exactly enjoy my job as an IT Solution Architect as it comes with alot of pressure and stress which is a concern if I go back. However bills need paying and although I have savings its not enough to retire on. From what I have seen in terms of benefits, unless your half crippled and barely able to get out of bed and pennyless you ain’t entitled to jack. After paying into the system for years as a higher rate taxpayer and serving my country for 15 years this naffs me off. So for me I am probably going to have to go back to work at some point whether i want to or not. Rant over, sorry


Wildrover, great to hear from you...and also to Edwina who confirms that I'd have to spend,(!!eek) much of  my modest savings that i've been diligently squirreling over my 20 yrs before any help is offered.....so I can't expect any government help despite my history of UK residency throughout my decades of paying tax in similar degree to Wildrover. Yep...only those facing dire poverty seen to be assisted now, which wasn't the case in the late 1980's;.  I've been a consultant Geologist on drilling rigs worldwide, then been an office based Geologist (when not unemployed) thereafter, planning deepwater wells; Medically, i am on 3 x Sinemet plus 100mg/25mg pills per day, which I know need to be upped a little, so I take a fourth pill on occasion. I know I can not retire in any degree of comfort, so I reckon i'll have to take on a local position outside of my training, since stress has been omnipresent in my career....but it couldn't involve manual dexterity or door to door selling...oh well..something will appeal, i'm sure;....Wildrover, do keep me posted, please, on your medical prescription changes....V best to all


Hi Spitz I will defintley keep in touch, to add insult to injury I have just had a critical illness claim declined due to associated symptoms prior to the policy being taken out. Don’t know why I bothered doing the good citizen thing during my life..... having a bad day but will get over it lol


I am so sorry about the critical illness result, and would definitely sympathise and try and raise the spirits..tomorrow must be a better day.!!..v best aka Spitz


*edited to remove personal details


Hi Spitz, 

seen the consultant today and was prescribed Repinex XL (Ropinirol). So now hoping that some relief isn’t too far away



PIP is not a means tested benefit, BUT, you do have to meet the criteria that they set. I looked into it some time ago after OH diagnosed with Parkinson's for almost 20 years at age 47 and felt that they did not meet the criteria. They worked for many years in a very demanding job until they could no longer  do this and then, for a few years I went back to work full time.

PUK are currently undertaking a campaign regarding PIP.

I have said this before on another thread and donned my tin hat:some are applying  for PIP far too soon after diagnosis and therefore jeopardising others. You may not like what I have said, and being mindful that PWP   symptoms all progress at different rates, BUT, most PWP do not require PIP  after a few  years after diagnosis.

Recently, after being   diagnosed with Parkinson's dementia, that was recognised as a criteria for an award of PIP. I hope you are never in the same situation in the future.


Greetings to Wildrover and Benji; firstly, I am glad Wildrover has been given the new prescription, and ask if it is bringing about any physical reduction in symptoms, plus improving any feeling of 'well-being'?

Thanks Benji; I , naturally, signed up to the PIP 'crusade', and wish the petition every success. I am absolutely positive I would fail to get any PIP payout. I suspect (somewhat lightheartedly) that impairment must be sufficiently advanced such that.....through being able to type clearly here, even though it's 'one handed' plus done slowly..... I probably exclude myself from suitability for PIP...thanks and best wishes to both


Hi Spitz, new prescription so far has had no affect, wasnt expecting it to really as its a very low dose presumably to get my body used to it. Going to see my doctor next week to up the dosage more than likely. Then hopefully feel alot better.


PIP  assessment is points based.

You are awarded points or nil points for various activities to a strict criteria.

Basically 'points make prizes'

I found the best way to approach the assessment process was to get a list of activities included and the score for each level.  

I am in receipt of pips and am aware of people who still work and receive this benefit.

My personal opinion is apply when you feel tasks and everyday activities are getting more difficult to do.  This may be in your first year or after several years.

Have a look at scoring system , add up your points and see if you qualify.   look on google for full details, you can get support from pduk and many other organisations to complete the assessment form.  Discuss this with your health team as they may be asked to provide evidence.

Good  Luck





I’m in receipt of both elements of PIP. I got the daily living element accidentally- I just wanted higher rate mobility to convert to Motabilty so that could use it to lease a flashy road going mobility scooter. When I was assessed, it was mentioning stuff like I need a perching stool to do the cooking (2 points) and more often than not my wife has to put my socks on ( that’s help in getting dressed, 2 points) and so forth. It adds up quickly - I think 8 points gets you standard rate PIP, 12 the enhanced rate. It’s hardly life changing money - it’s designed as a supplement to reflect the extra expenses that disability causes.

As I said, I simply wanted the mobility award for the mobility scooter to spare me forking out the best part of £6k for the scooter. I pay more tax on my pension than I get in PIP, so it’s more of tax rebate. It’s certainly no fun at all qualifying for it, that’s for sure.


thanks Wildrover and Island Mike; best wishes to both; I will look at the point system in PIP, and still, for now, feel I wouldn't get 8 points, though dressing is an effort for sure; Good luck Wildrover, as you probably will get some benefit from higher dosage, I hope



Hi William, I was diagnosed with PD in 2010 age 52 & had to be medically retired 2 years later after 35 years as an underground train driver. Whist I was still working & retired I was able to draw disability living allowance (lower rate) which is not means tested, this is now coming to an end & I’ve applied for PIP which as far as I know is also not means tested either.