Hello everyone

my name is jenny and it has taken my since 2003 to get there. I had 2 strokes in may and june but it was not until the second stroke was disagosed they find out was wrong, I was 48 and leadind a very full life and running my own business. Now after all this time my new benefit pip has been delined and wondered if anyone else had problems and what they did, I am no faced with going to appeal which is giving me so much grief mentally I cant think.  Any suggestions would be welcome.  My new dr is useless and do not know where to go. 

Dear Jenny

Ask citizens advice bureau. I have heard of PiP declining as almost the norm, people persevere and seem to eventually win the case,

Good luck with that one and welcome to the forum


Hi Colin, it is cab that is dealing with my claim, just wondered if there was anything else that could be done,  the whole thing is wearing me down physically and mentally, going for a meeting about appeal on monday with my daughter, just find it so huch hard work. Jenny


Dear Jenny

I think you are doing all that you can reasonably do. In my area I have seen the local Vicar help one parishioner (successful claim eventually) and Age Concern help another. I wonder if the stroke association would help you ? In my area we are not covered by the stroke association, but a voluntary group do a fine job and they would help. 

The effort of making the claim is hard on those of us with the dreaded stroke fatigue. And no one seems to understand us. I was getting crushed by the effort required to claim attendance allowance. I have claimed dozens of attendance allowances for clients, when I was working. I could do them in no time. But could I do my own post stroke . No. I can not concentrate long enough to pull all the bits togather. Age concern came to my home and completed the form.

I wonder if the staff at your GP might be able to help. Just a throw away thought.

I hope your daughter will take a major part in the process as I suspect it is too much for you to take in at the right time. I assume she has looked online to see the procedures and the tips.

Finally, I think you could get support from the stroke assocaition. Might be worth a try.

Good luck on Monday



Jenny Colin is right to say go to your citizens advice, somebody there should be able to give you good guidance. to know all the procedures especially with appeals etc. which it's been mentioned in the news has a success rate of 70% in getting your pip awarded. somewhere though you will have to find the strength to get through it all. do persevere though. 

probably they will hope you do not fancy challenging them.

of course they are getting many pip awards wrong, hence the high appeal success rate. if your doc seems of little use can you ask another or even try your consultant. gather all the medical evidence you can. any health professionals that have dealt with you. physios etc etc.

fight on, I wish you well. 

keep us posted on progress.

cheers. v.

 Hi everyone I’m new to this forum my name is David and I had my strokes bleed and blood clot Neeley two and a half years ago it changed my life from being able to work to being fatigued and unable to work 

  I now volunteer for the stroke Association and visit people like my self


Welcome, David,

My husband, John, had a Stroke on 7th February, 2017. He has an irregular heartbeat and suffered paralysis, speech loss and lack of vision within 5 minutes of climbing into bed. Fortunately, I was alerted by a message on my iPhone just before I went to sleep so put the light back on and,,, the rest is history. NHS at its best! His recovery is great although he has left side weakness, issues with time and other odd quirks we’re trying to resolve. Stroke fatigue has been a great hindrance in his recovery. Movement is slow.

We didn’t start to use this Forum until a few weeks ago and it has been so therapeutic, especially for me, but also for him. Several things discussed he has had total empathy with and says it makes him feel not so alone. For me, it has been recognising my own limitations and trying to plan accordingly.

We have been lucky enough to live life as we used to although there have been a lot of adaptations such as assistance when we go on holiday both by rail and air. We’ve had to ensure rest periods and for us both to recognise signs of fatigue before it gets too bad. Leaving places earlier than normal is just one example.

We hope you find belonging to this community as helpful and enjoyable as we have.


Hi David - welcome aboard, you will meet some wondeful people on this site.  Sounds as though you are being very generous yourself in the way you support others.

Keep posting, let us know how you are doing ?

Welcome on board Dave.

I am 3 years and I do some tiny voluntary work, including making tea and clearing tables. I am an FCA so yes, things have changed for me too. I find it hard to get into my new self. I quite like making tea rather than doing tax returns,  but there is still lots of the old me that gets in the way.



Hi Colin

The meeting yesterday was over in a flash, we told what was going to happen, signs forms today to log appeal, then we would be sent a wad of paperwork that is completed and sent off and then could take 6months for the appeal to be heard.  We are using an advise centre who have been very helpful, what I find very hard is the on my face to face the we say told bare face lies, even commented on me wearing flip flops in the hight of summer and these are not normal flip flops they have padding to help my feet, I could go on but it wears me out.  Anyway we have to wait now. I am hoping to join a stroke group but have just lost my mum and finding this loss very hard to deal will even though she was 88 my head cant cope with it.  The group will think will now wait until the new year now.  Thanks for the ear.  Jenny

 Hi both is nice Hear from you hope you’re both well it is a battle but we’ll get there in the end and has life is changed for all of us take care Best wishes Dave

Dear Jen

Plod on with the PPi. You will get there in the end. For your own health, dont labour over the things you think are wrong. Try to concentrate on the good things and your own recovery.Smiling is a wonderful weapon.

So sorry to hear that you lost your Mum. Stroke recovery doesnt allow for personal tragedy, yet many suffer. It is still a loss if she was 118. At the right time you may well benefit from some form of counselling. It should be from a stroke aware counsellor. Our church runs a bereavnment circle.

The stroke group will be there for you when you can make it. Unlike most other places, stroke groups allow all of your frailties without judging. They do understand what we go through. I attended and it was like being wrapped in a warm blanket.

Bless you Jen


Hi and thanks for your comment yes I will be posting quite often on them hope you’re well Best wishes Dave

thanks for the Colin, i dont wallow I try not to let it beat me, i do however get very anxious which in my previous life did not happen. heyho, question, how did you make your font bigger?  Where do I find stroke counsellors?  have a good weekend and talk again soon  regards  Jenny

Dear Jenny

Try the three big "A" letters down the bottom righ hand side. I am benused that if I reply to "friends" the font is biiger than general. This site is beyond me, I dont understand much.

I was inclined to be an anxious type of person, now I am a lot more anxious.

Getting a stroke related counsellor: Possible sources: Your GP surgery (staff should be able to help). The stroke unit at your hospital. The stroke association, or if they dont cover your area, then any voluntary stroke groups. Your local church. I am sure there are different answers for different areas. I didnt get a "stroke co ordinator", some people do. I did get a follow up team many do not (the follow up team have good contacts).

Hope someone else on here will help add suggestions. 

You need to consider whether you will pay privatley (not cheap) or get it on the NHS (long waiting times are probable).

Getting cold down this way.And dark. But at least the afternoons are not getting any darker, in fact today they start to get lighter. Spring is coming.

Best wishes


Good morning Colin

Many thanks for the info, will see what I can find out.

I do hate the dark nights but on the 21st Dec I think its the shortest day so after that the days will strat to get longer, thnkfully.

Spring is my best time of year.


Have a good weekent and thanks for the info