[seantiernanParticipant]

Hi – I was wondering if anyone in a similar situation to myself has successfully registered as Disabled.

[i]Under the Equality Act it is unlawful for an employer to discriminate against a person because of their disability. For the purposes of the Act, everyone with cancer is classed as disabled, and so is protected by the Act.[/i]

My situation:
I was diagnosed with Myeloma on 5 November 2009 and had and Autologous bone marrow transplant in August 2010. During my treatment I have been off work and have only recently started back on a part time basis since mid December.

However it looks like my transplant hasn't been a success and I will have to try something else (I should find out tomorrow 12 Jan). During my various visits to the hospital I have met some great people and a number of them are registered as disabled.

Now I currently don't have any major symptoms, I can still walk and get around and most people who I meet wouldn't even know I was ill as … and I hate it when they say this … you look really well (if only health was measured in looks).

So my point is as I don't know how invasive my next batch of treatment is, I'm not sure if I can continue work and I can't expect my employer to be supportive as much as they have been last year.

I now have to consider selling the house/car etc, which leads me back to the question has anyone had to deal with a similar situation and managed to register as disabled to get help and benefits even though they still have mobility or do I have to wait until the myeloma takes a serious hold of me before getting any assistance.

Any advice or experience would be appreciated.

Sean

[anndParticipant]

Hi Sean
It is a good idea to gather as much information so you are prepared if you become unwell in the future. The http://www.directgov.co.uk website has a lot of information on disability including benefits and there is a Benefit Enquiry Line
0800 882200 which may be helpful.

Kind RegardsAnn

[seantiernanParticipant]

Thanks Ann thats useful to me. I might give them a call later. 😀

[brochoParticipant]

Hi Sean sorry to hear you have to have more treatment so soon after your sct. I agree information gathering is probably the best step to take I would find out who your local Macmillan Benefits Advisor is through the hospital They are brilliant at negotiating all the forms etc and would be able to advise you about registering as disabled It really doesnt seem right that you hve to consider selling your home at a time when you are going to be having treatment and the macmillan advisor may be able to help with that issue as well Good luck and please let us know how you get on Best wishes Bridget

[GayeParticipant]

Hello Sean – Get on to MacMillan as soon as you can and get all the advice you need. As for the Blue Badge I applied for one and got it very quickly with the help of Macmillan. For a long time I didn't use it because I was still mobile enough but I am so glad that I have it now. Also I have been registered as disabled for some time and receive DLA which has increased as my mobility has decreased.

I am sorry that your SCT doesn't seem to have worked and that is a blow. Even more reason to get your financial affairs and everything else that affects your life into some order so that you can take away all that worry and concentrate on dealing with your illness. Don't hesitate Sean. MacMillan are there for all of us with cancer. Do keep us informed if you can. Good luck.
Gaye x

[MandsParticipant]

Hi Sean

McMillan advisors are usually very well informed and know exactly how to fill in the forms. There are grants available and they will let you know if you are eligible. If you have a Maggie centre close to you they usually have an advisor on financial matters also. Let us know how you get on. Love from Marion

[MinParticipant]

Dear Sean You must be gutted by the news about your transplant. I know how upset Peter was with just 5months with no meds
Peter gets the full disability allowance including car. The price 4 crushed vertebra a life on pain killers and kidney problems, and of course myeloma. He had never previously claimed any allowances in 43yrs as a worker.
He works now for 3hrs a day is partly mobile, and required a great deal of help to get the form filled in. The 1st application was dismissed summarily as we did not think to ask for help!
Do you have any mortgage protection insurance that can help? or and a car loan insurance ? Critacal illness insurance was available when we took out our last insurance and we decided against it and took the income protection instead, Only payable for 12 months but very useful when the DSS are being belligerent.
Apply for the blue badge very easy to get with the help of your GP and get help from Macmillan with the disability form. It needs expert help or you will fail.
if I can help I will just ask
Min

[RozParticipant]

Hi Sean

So sorry Sean to hear about your transplant.

I'm disabled. Michael was the one with mm and has recently died. But enough about that! about you and disabled. You get the disability living allowance form and fill it in or get your nurse, even Dial will come out and help with it.
At the begining Michael refused to fill it in, then took sick pay but when he was advised to not go back to work he filled it in. For 3 months he got what they believed to be the correct money, but if things change you notify them and it is changed.
Depending what your job is and your treatment will eventually decide if you can work or not. Michael was going back to work at one bit. So things do change.You can email me roz.bennett@virgin.net if you want and I'll explain alot more, because Disability things is something I really know about
All the best
love Roz

[PerkymiteParticipant]

Hi Sean, Best of luck for today I sincerely hope things turn out better than you thought.

If you are going to try for DLA or any such benefit find the local Macmillan Nurse and get her to fill in the forms for you. I do not care how clever and articulate you are, "they do it better!" 😀 . I went to them and got my blue badge and Benefits within a month with no trouble at all.

If you do not mind the question and I am not being intrusive (if I am please ignore the question), when you say your SCT failed what do you mean. I have just had my SCT (Dec) (diagnosed July 09) and am interested in what constitutes a "failed SCT", actually it is the first time I have heard the expression. At the moment my figures are good although I still have a residual PP of 2.2 which it is expected/hoped will go down in the coming months.

Kindest regards

David

[seantiernanParticipant]

First let me thank everyone for taking the time to respond to my post.

I have been to the Oncology today and I have had it confirmed the the Transplant wasn't successful. To explain a little further (David hopefully this will make things clearer as to why I called it failed as well :-))

Prior to starting treatment and when I was first diagnosed 5 Nov 2009 (everyone celebrated with fireworks for some reason ;-)) My PP was 58. After the transplant and the reading they took by mistake my PP was 12. I was told they couldn't get a proper reading until three months after the transplant. Hence the results I got today it was 28 so it is still creeping up which a successful transplant wouldn't, at least not for a number of years! So that's why I refer to the SCT as a failure. It was something that I had to try though first.

After discussions with the Dr I have decided to look at starting Velcade which if it is successful should hopefully give me a couple of years before we look at the next option/s.

Prior to starting the Velcade though I have to a full skeletal scan and bone marrow biopsy (the same as I did when I started). Oh my platelets are also low at the moment.

If my platelets have gone back up and the biopsy results are OK and the lytic lesions haven't increased and the PP hasn't increased, then I may not go on Velcade and they will just monitor me and keep a close eye on me. Somehow I think there is a rather slim chance of that happening though.

So I will probably start on the Velcade in February.

Going back to the point of this post though and as some of you suggested I have discussed the situation with my Dr and like others here has suggested talking to the Macmillan support. They have there own office in the Hospital so I will be making an appointment to see them shortly and will keep everyone informed.

Thanks again for your well wished and help. Greatly appreciated. 😀

[PerkymiteParticipant]

Thanks Sean, yes, now I understand, how very disappointing for you.

I went to the hospital Macmillan Nurse as well. A tip my friend do not be a bl**dy hero. If you need help at night say so, enough said.

Kindest regards

David

[lorraineyParticipant]

Hi all,
I'd like to tell you of my experience of getting disability benefit. I live in France so know it's different than in the UK but I applied last February 2010 and they check applications rigorously here..(not saying they don't in the UK) Your application goes to a panel and they decide if your application is worthy or not. They have an independant doctor who checks the applications, and my GP told me that if he doesn't agree that your illness is of a certain criteria then you won't be granted the benefit. The form I had to fill in was 26 pages, and also a form which my GP had to fill in was 8 pages. It took until September for them to notify me that my application was accepted, I had to sign a form agreeing this! It has taken until last week 7th January 2011 for them to pay me the benefit money…almost a year from when I applied. I have been awarded the maximum amount of which they don't give easily. Myeloma is obviously an illness that is ranked high on the list. They have backdated it thankfully but it's madness that it's taken so long. It has taken this long for my blue badge too! French beaurocracy at it's best!!!
Sorry to waffle on!!
love n hugs Lorraine xxx

[brochoParticipant]

Hi Lorraine blimey I will never moan about how long it takes for our benefits to go through again after reading your post Thank goodness you were granted it at the higher rate. Is the form more specific do you think ? Here the DLA questions stick to a limited criteria and dont always allow for illnesses that dont fit them My daughter has cystic fibrosis which means a lot of her care needs are to prevent her getting worse and she was refused 4 times , although she now gets it without needing yearly reviews Do you have to reapply at any stage? love Bridget x

[DaiCroParticipant]

Hi Sean,

I remember the nightmares of filling in all the requisite forms especially those concerned with pride but my brother who works for the DHSS (or whatever it's called now) insisted I did it – and he was right.

I am registered disabled with full DLA benefits. I can walk for short periods but my back seizes up and my peripheral neuropathy turns my feet into lumps of clay after a couple of minutes of straight walking. I don't need (or won't use) sticks but my mobility has been severely compromised.

DLA has nothing to do with sickness benefits, it is due to your condition not your circumstances. Its best to register now… even if you only get the lower level it is relatively easy to step up rather than start the process if or when it kicks in for real.

The online DLA site is pretty good IMO.

Dai.

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