Prolems Wtih everthing

My partner has Primary Lymphoedema. He has been having a lot of problems with his day to day activities. He needed to give up work due to his problems. He is claim ESA but the medical examiner at the centre says he is fit for work. He has problems with his back and most days can't outside. We are still on the waiting list to see the clinic but I have no clue when that is.

What can he do?

21 Replies

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  • if its for pip that he has been told no, appeal the decicion but this time tell them that he is unable to go to them so he needs a home visit. Also to answer no to every question as that let u explain. if you answer yes they just tick a box.

    that was the advice I was given and I now get pip.

    hope this helps

  • thanks will apply for pip soon just need to sort a bank out

  • As a man it can a bit harder to deal with the emotions and psychology of lymphoedema; we are in the minority. But there is support available regardless of gender, it just takes persistence to source it. Sadly services can be a bit of a geographical lottery. Our biggest support is ourselves; we need to value ourselves and be determined to conquer our lymphoedema. Good luck Emmy and partner!

  • Hi there , I have Lymphoedema in both legs as a side-effect of a prescribed medication. However, I previously worked for 12 years as a CAB trained Welfare Rights and Debt Adviser . Your partner needs to appeal the decision and to keep a diary of exactly what effect his Lymphoedema has on all daily activities and what causes him pain and why he cannot go outside. He needs to keep the diary for at least a month, preferably indefinitely. I have only just had my first appt at a Lymphoedema clinic after suffering this for two years.

    The problem is that many doctors do not really understand Lymphoedema and therefore the chances of the medical examiner at the centre, really understanding, the limitations it places on your partner's life, were minimal. You need to register a claim for Personal Independence Payment (PIP) see gov.uk/pip/overview. This payment is separate from ESA. You will need the diary for claiming PIP as well.

    Carers UK website has a facsheet on PIP which you can download

    at carersuk.org/help-and-advic...

    I hope this helps

  • I applied for PIP today and just waiting for the PIP 2 to arrive

  • thank you for you posting this reply as I suffer with lymphoedema in both legs ankles knees and thighs, and too recently I won appeal at esa tribunal, its best to ask if you can have some who understands about lymphoedema present at all hearings thank you again

  • We never won the ESA appeal as when we had the medical the nurse said that she was a ex-lymphoedema nurse. and said that my partners Lymphoedema wasn't that bad.

  • Hi, It is very frustrating as primary lymphedema is not recongised as a disability unless it's unfortunately connected to cancer. The DWP needs to look at this and acknowledge the condition in its own right. As a primary sufferer myself (in both legs and undiagnosed for 17 years, my condition is classed a chronic) however I can function at the and am able to work, although my sickness is becoming more frequent and longer! I am also starting the process of applying for PIP - the booklet is massive!

    Until the DWP recongises primary lymphedema and more is known about the condition all primary sufferers are facing the same up hill battle. People hear lymphedema and immediately make the jump to cancer - I know I did!

    I sincerely hope you get the out come your partner clearly needs.

  • until we get a mp or media involved we are not to get any help.People dont understand how life is affected by lymphedema .Sitting and standing is unbearable buying clothes and socialising are problems

  • i feel empathy for you, I had to loose my nursing career because of lymphedema in both of my legs, I couldn't be on my feet for 12hr shifts and couldn't work if ever as happens regularly in compression bandages, I cant find footwear sometimes and u get periods of being unwell and lethargic. Like him I was told I was fit to do my job although the NHS dismissed me after 30yrs as a regisyered nurse. I tried everything, I wrote to my MP, the priminister and was told my individual case was not worthy of a reply, I think the total lack of knowledge in this country and lack of support makes it all very unfair. Appeal if you can mine failed but he might be different. I wish you luck and know you are not alone.

  • maybe we should all appeal to try and get it noticed by some one. as my partner's runs in his family. it's hard for them all

  • OMG it would make you weep and yell at the incompetency of GPs/medical teams that are assessing 'fitness to work' under the new ESA and PIP rules. Can LSN/BLS please start campaigning with UK Govt to get this sorted. Both Wales and Scotland now have proper Lymphoedema Framework/Strategy documents and as a result services are becoming less of a postcode lottery. I have upper limb lymphoedema and it definitely sounds as though lower limb(s) affected causes more difficulties. Good luck with getting proper diagnosis and treatment.

  • I was aware from the latest LSN newsletter that NHS England are ignoring the recommendations of the National Cancer Action Team with regard to a Lymphoedema Strategy for England and have written to my local MP in Reading regarding this (13th October). He has replied confirming that he has written to the Chief executive of NHS England, Simon Stevens regarding the situation. I was not aware, however, when I wrote my letter that Wales and Scotland already had Lymphoedema Framework/Strategy documents. I am now even more annoyed about NHS England's actions, especially as here in Reading I cannot get any treatment for the Lymphoedema, on the NHS because I don't have cancer.

  • i might consider writing to my MP too. but i'm not sure whether it may help

  • If all the members of this community wrote to their individual MPs about the problems getting treatment and with the DWP it would make a difference. MPs talk amongst themselves and with a general election approaching they are even more likely to take notice. Whilst my Conservative MP is helping me, I have also now contacted the Labour Party Political Candidate and will be meeting with her on Friday.

    I also went to my local council Health and Well Being Board meeting and raised a question about the fact that my local CCG is saying the Complex Decongestive Therapy treatment that I need has no evidence to prove it is beneficial despite the fact that it is offered at hospices and Lymphoedema clinics in other areas. The council board chairman has now stated that the board will investigate this for me. Other councils should have similar boards or committees looking at health issues. I was advised today by Karen at LSN to look at the CCG (for my area) Commissioning Intentions document for 2014-2015. All CCGs produce this document. There are bullet points near the beginning of these documents stating what improved outcomes they intend to deliver. In my case they appear to be not considering three of these in denying me the treatment. I have therefore pointed this out to relevant bodies.

  • Oh my goodness that seems absolutely crazy and so inequitable. Things are not 100% right yet up here in Scotland but improvements are being made in line with Strategy. I will see if I can track down the document on the Scottish Government site and post the link to this Forum.

    Good luck with challenging NHS England

  • Hi Emmie

    In full agreement with everyone's response, but would like to add in that my feeling from reading your post is that your husband may need some extra support to meet his emotional wellbeing as well as the financial support.

    For you to write in shows the love and support you have for him. He is very lucky to have you as supported family and friends really matter. I want to wish you both all the best in getting everything sorted, and consider all the various support forums and groups that work in line with LSN to support us Lymphies.

    Best Wishes

  • He doesn't seem to have emotional problems. He is just sore most days.

  • Being 60yrs and a sufferer of primary lymphodema in both feet and legs and swollen toes

    This makes my daily life unbearable I feel the pressure build up as the day goes on I have to rest as much as I can and do things in stages I using s perching stool at the sink which I could not do without I can't stand to iron so sit and use a iron press which is fabulous I also can't in one place too long so standing in a queue in a shop or bank is something I can't do any longer I have suffered since early years my situation got worse after having cellulitis several times which was hard to get under control so now I am in control of the situation more and I know what I can and can't do and what I need to do and that is by listening to my body more I know when enough is enough and the medical team do need to support us more it's our body not theirs it's us that suffer lymphoedma does bring fatigue and we can get depressed as one day is good the next can be bad facing another day of this illness is a very big challenge it is different for everyone it annoys me that other people do not really know how we feel or struggle doing daily things that other people can manage I find it is very hard for us to get our views across to others to make them understand I do however find this site extremely helpful. LSN and Lymphodeama Nurses also very helpful but GPs and Job Centres and Employers do not fully understand the Government should be made more aware of how we are suffering or how we struggle to find shoes or slippers to fit my feet is a complete nightmare I have at times had to wear men's slippers which is not pleasent or flattering I so which for a shoe manufacturer to make shoes or boots for a EEEE fitting with memory foam on the sole to ease the pressure.

  • We posted the P.I.P form off today. hopefully it goes well

  • I know this was ages ago but I though you guys might want an update.

    My partner has seen a Lymphoedema nurse Wednesday just gone. She was very helpful he is getting compresion garments made and will receive them very soon.

    If any one in Kent doesn't mind the wait to see them I would recommend the service that is offered at Pilgrims Hospice Ashford or Herne Bay Hospital as the staff are very kind and helpful.

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