Hi to you all.
I was just wondering if any of you blood cancer patients have any problems with claiming benefits like ESA and PIP? I am now registered disabled (deaf in left ear and 70% hearing loss in right ear). I’m due an assessment for PIP and I get the impression from the DWP that blood cancers and related side effect issues are ignored or even regarded as not a problem at all. A few years ago I won a court case for my claim for PIP (used to be DLA) and the DWP didn’t even bother to turn up. The judge, Consultant and the Disability rights officer were the ones who judged the claim and even said that I should never of been put into this position in the 1st place. I was awarded back payment for the whole year in which I was fighting with the DWP. I almost gave up cos of stress etc, but my social worker told me to stay firm. They also said that my claim would last 5 years until the next assessment. Well my 5 years is up in February 2020, and they are reviewing my case now. I’m just waiting for the date for a face to face assessment. I just wanted to know if any others have had similar experiences with the DWP and how they treat people with long term illness and its side effects etc.
Hi to you all.
Hi, I cannot really help I am afraid, but I find preparation is key for me so I make sure I get all the issues I want to get across at a meeting. This is because I do not deal with what personally stresses me well since diagnosis and I freeze and everything just disappears out of my mind. I also find one of my debilitating symptoms is fatigue and that can be triggered by me getting stressed or emotionally or physically overdoing it. It can come on immediately or up to 48 hrs after the event. Also because I was diagnosed a few years ago I forget how I have learnt to manage my symptoms and adapt like not travelling in the rush hour because I get feint, not doing evenings because I am too tired etc. Look after yourself and please do let us know how you get on.
Erica thanks for your reply.
It seems like we have similar issues, like fatigue etc. When I went to court all this stuff which I told the DWP was shown to the judge. My social worker at the time told me that it wasn’t unusual for the DWP to not turn up for court cases if they know they will lose. I find this quite disturbing that they treat seriously ill people this way in the hope that a court case will frighten a person into giving up. My past experience with them has given me the impression that they don’t know much about blood cancers and its effects on physical and mental health. Because of my hearing issues I get dizzy (vertigo attacks) if I’m amongst big crowds and lots of noise. I do physio/balance exercise for this which help a bit but that’s all. I’m not looking forward to this assessment because of my past experience with them. But hopefully they will be more understanding this time around. I do wonder if their so called health professionals really are professionals? I might ask for proof. I forgot to mention that when I was at court it turn out that the health professional who had rejected my claim was actually only a qualified physio therapist not someone who had knowledge of serious illness and mental health problems. Anyway thanks again for your reply. I just want it over and done with.
I don’t blame you just wanting to get it over with. Lingering things also stress me out. Perhaps it is forgotten that you are certainly not choosing to be in this stressful situation and the easy way out would be to give up.Take care.
Hi. I have recently done a piece for Bloodwise which will be going on their website soon on dealing with finance after a blood cancer diagnosis. I have similar problems in that I have hearing loss since 2008 when I was being treated for relapsed Hodgkins Lymphoma with DHAP. This has been getting worse each time I have an audiology review. I also have other side effects which are being treated with medication. I agree that you need a suit of armour when dealing with the DWP. When I had my first medical review for Incapacity Benefit they would not even look at medical notes and I also had a person with a strong Eastern European accent assess me. My husband had to repeat everything to me. Being asked to press against his hands, touch my knees, try to touch hands behind my back was exhausting and painful, but didn’t tell him anything about my day to day problems. Three years ago I was on my way to another assessment when I received a call trying to cancel my appointment which was in 30mins time. I told them I was going to sit there until I was seen. The receptionist kept trying to get rid of me but I stuck to my guns. I was eventually seen over 3 hours late by a lovely nurse. Having a medical professional assess me made all the difference. She just asked me to tell her about my daily routine, how much help I needed, how often I saw a medical person. She then told me at the end of the interview that I should think about applying for PIP (as I had also recently been diagnosed with heart failure). As yet I have not done so as I know people in worse situations than me who have been turned down. I am however in the supported group for ESA, which means they accept that I will be unlikely to work again, and I won’t need further assessments for that.
From my experience they seem to pick on the most vulnerable. At my last review there was a man who had had a brain tumour and stroke and was in a wheelchair. Like me he told them he was stopping until seen as his wife had taken time off work and they had come by taxi. Another had a blood test form and was so frail and yellow. Neither could be faking their problems! Some of these assessors ought to spend 24hours with the person they are assessing. I am not sure, but I think the contract for assessments was changed in the last 5 years (hence I saw a human, not an android last time). I do not have a social worker, so at least you have someone else fighting your corner. I hope you hear something positive soon. Best wishes
Hi, glad you were able to get what you are entitled to and I hope your next assessment goes smoothly. After 3 years of receiving PIP I was turned down after a renewal assessment. I appealed and now I’m awaiting a tribunal. I’ve had 5 years of ongoing treatment but until recently have never had a remission in the symptoms. I’m not too hopeful that my retrogressive claim will be successful. It’s a depressing and demoralising process.
Thanks for your reply.
After reading what you have gone through, you should apply for PIP. You are definitely entitled to it. Yes, their has been numerous reports of bad treatment from the DWP and the so called assessors/health professionals. Things like this should not be happening as it’s meant to help people with long term illnesses and disabilities. My court case 5 yrs ago highlighted the problems about the DWP. My court case was made a case study by the disability rights person who was part of the panel hearing my case. From your perspective, you should contact your local citizens advice bureau and also the local cllr/MP. Get them involved in this and to have them help you. One thing I forgot to mention in my original post is that many hospitals do have their own social services teams that help with finacial help/benefits for their patients. Also the GP can help. My hospital (royal marsden) helped me with letters etc for my PIP and ESA claims. Currently my social worker is snowed under dealing with universal credit claims from hundreds of people. My social worker is employed by the local housing association (Vivid housing association) and deals with all those tenants who live in Vivid housing association homes. She is currently keeping an eye on things in regards to my PIP assessment. But her workload is big right now. She has one other person helping her, to cover most of the Hampshire area where Vivid housing association has properties. So if worse comes to the worse i will ask royal marsden and local cllrs to assist. I hope everything works out for you. It’s sad that everything has to be fought for, when in fact it should be easy to the point of caring and helping people who have long term illnesses and disabilities.
Best wishes to you.
Thanks for your reply.
Yes is a demoralizing process and it should not be like that. Like I said to Pisces56, get the hospital involved and also citizen advice as well as local cllrs and MP. They should be able to help and take some of the stress off you. If you live in a housing association home or council social housing, they may well have social services teams who will help. Either way, don’t give up the fight. I hope it goes well for you.
Best wishes to you.
Quick question - Has anyone with ET successfully claimed PIP or applied for a Blue Badge.
Hi @Mel1967 a great big welcome to our forum and a brilliant question that I cannot answer however I will copy your post to Blood Cancer UK for you @BloodCancerUK in case they can help and if you would like to speak to someone there the Blood Cancer UK support line is there for you.
I await others experiences.
I look forward to hearing more about you.
Look after yourself and please keep posting.
I have Myelofibrosis and successfully applied for a blue badge recently. I have also applied for attendance allowance which I’ve been told I should get the higher rate. I emailed the support team at my local hospital and Macmillan Finance Services completed my claim, obtained a DS1500 and just rang me for personal information. I claimed under the special rules. They also sent medical information to support the blue badge application. The badge only took 8 days to come through. Hope this info helos.
Hi @Mel1967 A really warm welcome to our forum and thank you for asking such an important question. I do hope you are doing okay?
Claiming PIP and indeed any welfare benefit can be really daunting & at times confusing so do know should you wish to talk anything through i would be more than happy to have a conversation with you about this.
Personal Independence Payment (PIP) can help with extra living costs if you have both:
- a long-term physical or mental health condition or disability ( incl a blood cancer)
- difficulty doing certain everyday tasks or getting around because of your condition
You can get PIP even if you’re working, have savings or are getting most other benefits.
To start the process you can apply online here- Personal Independence Payment (PIP): How to claim - GOV.UK (www.gov.uk). You can also contact your local citizens advice bureau who will be able to offer support in form filling and understanding of what is being asked.
Their website does offer online tips here for when completing the form- Check how to fill in your claim form - Citizens Advice.
It is also helpful, but not essential in completing your application that you send in any medical evidence that you may have which could confirm your current symptoms or indeed the impact in which cancer is having on your day to day life. This can be a supporting letter from your Haematology team, GP or indeed clinical nurse specialist.
Often the form filling can be daunting and very lengthy so filling it out in sections can help and do just get in touch should you need any support or wish to talk anything through- Blood cancer information and support by phone and email | Blood Cancer UK.
Best Wishes, Lauran
I have ET but it hasn’t affected my mobility in any way perhaps speak to your Doctor if you are having problems I’m sure they will help with getting a blue badge
I have ET and I get PIP. PIP is based on scoring points in various areas, and can be difficult to get and you will need a supportive GP. My first port of call was citizens advice, I had a face to face appointment with a lovely lady who turned my chatting into the right words and phrases to us. Don’t forget the fatigue element it is important. My case was ok as I had surgery on my leg for clots, left it with lymphodema, also have motor and sensory neuropathy in both legs. So with the PIP I automatically get the Blue Badge. Good luck with your claim
A great big welcome to our forum @Margaret01 and I hope you find it informative and supportive.
I look forward to hearing more about you.
Look after yourself
Hi Mel.I have polycaemia vera and Jak 2 i get high rate pip for care and moving around i have a few other conditions but certainly as soon as I said I had blood cancer they upped me from low to high you also entitled to blue badge with low or high good luck applying if you speak to local carer centre they will help fill in forms as they know how to word it
I have Polycythaemia vera (PV), I found Age Concern most helpful after I failed in my first attempt to get Attendance Allowance. They asked me several questions then filled in the form for me. I now need to look into getting a care allowance. Marylin
Pretty easy to do as long as your Carer doesn’t earn more than £233 ,a week unfortunately my husband is a bank worker so his wage differs weekly takes about 3 months to get your claim done but worth it as so many things your partner can claim on your behalf good luck
I am not sure what is happening this week but suddenly I received a letter from the DWP that since the beginning of last March we should have a certain amount of pension credit to live on. Much more than we were previously getting. We have received a lump sum of back pay and a nice sum weekly for the future. As if this wasn’t enough, had a letter from Cornwall Council saying that they were giving us a £100 towards the cost of living. It is my account already. I seem to have a Midas touch at the moment I am sure it won’t last.
It is most welcome as we have been trying to make our home as safe as possible for my husband to return home to from hospital. This has involved having a carpet fitted in the hall instead of rugs, getting an electric hob instead of the existing gas one, he has also wanted a tv in the bedroom for ages, this involves getting. An aerial point installed which appears to cost nearly as much as the tv.
By the way was anyone aware that if you have a pacemaker you shouldn’t have an induction hob? thank goodness my carer told us about that before we bought one. My husband has a pacemaker. It is some thing to do with the magnetic force and pacemakers. A shame as they switch themselves off if no,pan is on them. Ideal for someone who is becoming forgetful. Marylin
Well, all I can say is what a week @Marylin, long may the Midas touch continue. When I hear the word ‘Midas’ I think of the Hollies song ‘King Midas in reverse’.
I did not know about pacemakers and induction hobs, thank you.
You have got so much going on you are doing brilliantly, look after yourself as well.