Lymohoedema and arthritis and the new PIP assessments

I was assessed by a doctor in 1995 and granted Disability living Allowance for life due to my bilateral leg lymphoedema following major cancer surgery . . This helped me to be able to plan the rest of my life as I had to give up my career in 2000 due to the pain and the additional problems I had picking up every childhood ailment with my reduced immune system . I managed to get a different type of job where I could work part time and I could sit down but still have flexibility to move around - these are quite hard to find !! Since then I have developed arthritis in both hands , both knees and both hips . They wont operate as the Lymohoedema would make it very difficult for the wounds to heal and I have historic wound healing problems following the cancer surgery .

This year as I'm 64 years and seven months I've had to be reassessed and moved onto the new Personal Independence Payment . (People over 65 do not have to be reassessed ) .

I've undertaken the assessment , carried out in my own home and only been granted 10 points in the mobility section so cannot stay on the mobility scheme and my vehicle will have to go back . My care section has actually been raised much higher as my problems looking after myself have got much worse.

In the mobility section there are now two parts . One dealing with the problems of how you can manage to walk and the other dealing with how you can plan and follow a route . They have not contested my walking difficulties and accepted that I use a wheelchair for any distance walking . On the planning and following a route I was asked to remember three words , to count backwards from 100 and to spell the word world backwards . This proved to them apparently that I had cognitive ability and the fact that I could drive a mobility vehicle meant that I had cognitive function . Therefore they judged that I could plan and follow ANY route UNAIDED ( don't know who they think will push my chair) and therefore I've got 0 points in this section . As you need 12 points to be able to get the higher rate mobility pip payment and I only had 10 points my mobility vehicle would have to go back !! As a widow with no other transport and I can't use public transport on my own I will be therefore totally reliant on other people to help to ge me to hopsital appointments . Lymohoedema treatmenrs , shopping etc . I could understand this if this was based on a judgement that my mobility wasn't sufficient but to lose this facility because of my MENTAL ability seems absurd. I can appeal and intend to do so but my vehichle still has to go back . No one can tell you how long the appeal will take . They tell me I can purchase my car which will take all my life's savings but if the appeal is successful I will then have to sell it on and loose money or I would end up with two cars . I have even offered to personally pay the lease until the appeal is heard but this is not allowed . After losing my husband , my main carer , last year and struggling to try to rebuild my life this feels like a kick in the teeth . There appears to be no way round it if you have a little bit of intelligence . Pip is supposed to help disabled people access life's activities but it's doung just the opposite . If anyone is waiting for their Pip assessment then just be aware of this problem .

24 Replies

  • Sorry to read of your problems, I'm not in a position to give any advice but I'm sending you lots of love and hugs that it all works out for you, stay strong xxxxx

  • Thank you - that's really kind . I just don't want anyone else to go into this unprepared xx

  • Sorry to hear of your dilemma, common sense seems to have gone out of fashion.

  • Hi am really sorry to hear what your going through, you have been through the mill as they say, I wouldn't be happy giving you advice incase I got it wrong, but what about the citizens advice bureau maybe they could help you? Good luck

  • As above. The Citizens Advice Bureau would be an excellent place to get help. I have a friend who is an advisor at one of their branches and your situation is just the sort of thing they help people with.

  • I fear your story of PIP assessment following years of successful DLA is all too common. I know that some charities the help people with mobility difficulties such as MND Scotland are gathering up stories and using these to campaign for more sensible assessments. Perhaps LSN could get involved too. You need back up to fight this nonsensical decision. Good luck with getting it sorted.

  • Thank you . I know they are trying to save money but decisions like this that are not based at all on your physical disability are wrong . I hope there is some group feeling expressed against this as probably that's the only way they will listen

  • Wow. It seems as though your health care is difficult to use. Here in USA we are just told NO to everything Lymphedema related except for diagnosis. They are supposed to pat for stockings but still deny it. I hope you find some good help and some peace of mind.

  • We have a good system in place in many areas in the uk but it isn't consistent sadly at the moment and people that develop it following cancer treatment still get easier access to treatment rather than those born with primary Lymphoedema . We do get our garments though on prescription or through the clinics and depending on your local facilities we have opportunities for multi layer bandaging manual lymph drainage and even in some places the treatment using lymph assist

  • Most if us get OK free health care for our lymphoedema and our garments are free or for a small charge. However that is not necessarily the case for all as not every geographical area is quite the same in terms of (mainly) availability of service. kHP22 is talking about a type of UK disability benefit which is getting harder for people to qualify for, even if they have had the same sort of benefit for years. I say this because here in the UK we tend to be very proud of our free National Health Service (although it is not perfect).

  • Wish insurance were better here in the US for lymphedema. I am amazed how many people here don't know what to do about it or just cant afford to do anything about it. Sad.

  • Like you I have primary lymphedema along with arthritis and gout which affects my whole body if I don't watch what I'm eating or drinking,and I too have failed the pip test despite being awarded DLA for life by a doctor NOT a computer programme. My husband died two months ago and I had to deal with handing my car back as well. So I understand completely how you feel. When I spoke to dwp their representative had never heard of lymphedema so dismissed it out of hand. How are w e supposed to fight this attitude.

  • Thanks for the reply . I'm sorry to hear that you've been through the same . In my case they accepted the Lymphoedema and the arthritis and gave me ten points for that but gave me no more additional points to get me to the 12 that I needed for the higher rate because of my cognitive ability !! Are you appealing the decision ? I know it's difficult to even think about when you're dealing with beteavment as well like myself but I just don't think they should be allowed to get away with it . We were assessed by doctors and given a life time award - why couldn't that stand . Wasn't the award almost like a written contract that they've now gone back on !! Things shouldn't be retrospective . Anything from now on should apply to new claims

  • Yes I am appealing. Here's to keeping fingers crossed for both of us.

  • Good luck to you both in your appeals. i think there is quite a good success rate on appeal but why on earth 'lifetime DLA' does not translate into full PIP I have no idea. It makes a mockery of the whole idea of 'personal independence'.

  • Hi maybe you good try an organisation called BENIFITS AT WORK they produce details and help on how to claim pip with the best way to fill out forms you need to claim, it cost about £20.00 a year to join but its a little price to pay to get the best advice. Get on line and read the information and then if you think its for you sign up and get all advice on all things concerning benifits you have nothing to lose any a lot to gain. Good luck

  • Cannot find this site - can you please provide a link/URL to BENIFITS AT WORK



  • I think this is the site that is being referred to.

    Hello everyone, I've been a member for a while now, but haven't had the time to introduce my self...will do so soon!

  • You could try contacting your local MP they should appeal your case for you and I have heard that the group in charge of funding will listen more if an MP asks for you. Good luck I hope you get the decision reversed.

  • Thanks - I've spoken to my local MP and she has recommended a group that can represent you at tribunals . Due to my husbands recent death I don't fed up to coping with representing myself at a tribunal . I'll keep her informed though about how things progress x

  • Sorry to hear your story .. One Question - "Do you 'have' to have a Motability car if you do qualify for PIP ?" .. If you don't, then you could buy the car you have now, or another one, using your own money .. Certainly worth making an Appeal .. And if you win, you will then have money to be able to replenish your savings, as I understand that if you win an Appeal, the money is backdated to the date you Appealed .. You could then run that car until you need to replace it, then either buy another, using the PIP money (plenty of 0% deals around), or get another Motability car .. And if you Fail again ? .. Which I hope you don't .. I might have misunderstood you, but I thought you said you failed to get the 'higher' rate, so I'm assuming you got the 'lower' rate .. Could you use that money to buy a car using a 0% deal ? ..

    However - another question came to mind when I read your story ... IF you had 'failed' the cognitive ability test, I would have thought you shouldn't be driving a car anyway ...

    All the best for a successful outcome ..

  • Yes I must admit I thought that as well about the cognitive ability aspect !! No you don't have to get a Motability vehicle if you get the advanced rate and yes I could buy my existing car which is what I intend to do if I have to . I have been granted the lower standard rate so I'll use that towards my costs . The main problem is that on the Motability scheme you drive on their insurance and you don't pay for servicing , tyres etc just like with a lease car , so any money that you get you'd have to use to pay for the upkeep of the vehicle and you wouldn't be able to save to buy your next car , This wouldn't be so bad if you were still working but when you're pension age and you have a much lower fixed income then this car will have to last . As you've not had your own insurance whilst you've been on Motability you also don't have any no claims history so the premiums are sky high . The main principle is that you were given a life time award on disability living allowance and based all your future plans around this and now suddenly everything's changed following an assessment that wasn't even carried out by a doctor . I feel so annoyed that they've accepted my physical limitations which was the same as on the disability living allowance but added this new section based on cognitive ability . Anyway we will just have to wait and see what happens , They haven't replied to my letter to ask for a reassessment but I suppose I'm not surprised about this , I think they will drag this out as long as possible so that I will have to make a decision on whether to buy my car or not before I know the outcome . Thank you for your best wishes x

  • I am so sorry to read of your recent experaince re pip and assessment. I was unsuccessful in 2012 I appealed and failed, I have bilateral lymphedema in both legs, arthritis and now ligament isseues in my left leg, I had been a registered nurse, I was hurried out the nhs after 3oyrs, it was an horrendous time to find that I couldn't get any financial assistance and the assessors didn't regard the nhs assessmenets or that of my Gp and clinics was good enough. The whole situation is farcical but I wish you luck and better fortune

  • Thank you for taking the time to reply . I'm sorry that you've been unsuccessful in your claim . It's all so haphazard , I know other people who have Lymphoedena and arthritis that have got the advanced rate . Doesn't quite make sense . Anyone who's lived with Lymphoedena and arthritis knows how limiting it is both physically and psychologically . These are life long conditions that change your life in unbelievable ways . Pip is supposed to help people with disabilities to access life's activities . I wish you all the best x

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