As CLL is incurable (at the moment), is it classed as being terminal?

I ask because to be able to claim for Disability Living Allowance, your illness has to be terminal but they only consider "terminal" as expected to live less than 6 months.

It's a bit of a nightmare to be able to claim for the benefits we are entitled to when there is such conflicting information.

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  • Hi stunned. It's an absolute minefield isn't it? Compounded by the fact that DLA is being replaced with PIP (Personal Independence Payment) for new adult claimants. Existing claimants will start being reassessed in 2015 for PIP though certain areas of the UK have already starting implementing it. It's a points equal prizes benefit!

    nhs.uk/CarersDirect/moneyan...

    Answer to your question is you'll get DLA under the Special Rules now if your specialist or physician is prepared to complete the DS1500 assessment saying that you don't have much prospect of living beyond 6 months. It's sobering stuff and dependent on the stage of your CLL, I can't see many physicians agreeing even with CLL having an 'incurable tag'.

    People who live beyond the 6 months have the benefit assessed and usually removed if they live 2 years I understand. Professionally I have a lot of experience in these areas.

    DLA which isn't under the Special Terminal Rules is dependent on assessed need not diagnosis. So a cancer dx won't guarantee automatic qualification. Physical, mental and supervision criteria have to be satisfied. And I have a strong suspicion the new PIP benefit will be even more onerous because the intent behind it is to reduce benefit eligibility and numbers. I've been reading extensively on the subject.

    Incidentally Macmillan offer an excellent benefit advice service should you need their advice.

    Hope that helps in some way. Regards,

    Newdawn

  • I support Newdawn in her comment that Macmillan has an excellent advice service.

    In my area on the South coast Macmillan have knowledgeable people who work a few days a week at the Citizens Advice Centers.

    I know people who have used their expertise, and report of good friendly and helpful advice.

    I would suggest checking Citizens Advice and asking for their Macmillan contact.

    Dick

  • Here is the contact containing free phone number for Macmillan (UK) which deals with all matters of support from emotional, practical, financial and requests for grants.

    m.macmillan.org.uk/article/...

    At the present time I know that Citizens Advice welfare benefits advisers

    are absolutely inundated with requests for help with DLA/PIP, ESA advice following stringent benefit changes and sanctioning. So much so that many have been unable to take on any further requests for appeal and tribunal help etc. Certainly that's the situation in my area. Macmillan is therefore a good place to seek advice for anyone needing it as some do have Macmillan advisers attached to Citizens Advice Centres as Dick says.

    It's important to stress however that any DLA applications under the Special Rules are usually dealt with speedily and with a great deal of sensitivity by the DWP.

    Newdawn

  • You can ask your local council about - The Welfare Rights Unit - they will be able to give you advice on filling out the forms, and should also be able to come with you to the appeal if you need to,as it also helps to be represented. You should find them online.

    The key thing to note is that eligibility for benefits is determined by assessing how an individual's ability to function is affected.

    With CLL the disease itself is the functional impairment - Chronic Lymphocytic Leukaemia is not just a cancer, but an immune system disease as well.

    People with CLL have to live with the effects that others suffer from when they are being treated for other cancers with say chemotherapy, fatigue/infections,stress etc, hopefully those patients will after treatment be clear of cancer ...

    Until a cure is found, the effects of CLL mean that we who have the disease do not know from day to day if we can obey they conditions of a DWP programme ... we are in Limbo.

    Personally I would submit that patients with Chronic Lymphocytic Leukaemia, who are having problems with their immune system, with fatigue, stress and repeated hard to recover from infections, should be assessed by the DWP, as facing the same problems as those whose immune system is compromised due to chemotherapy.

    For benefits - DLA and ESA etc ....

    I've been fighting this injustice through my MP ... Through the DWP - I got an answer from Mike Penning MP .... " The key thing to note is that eligibility for ESA is determined by assessing how an individual's ability to function is affected, rather than the disability or health condition itself "..... ( in other words the system works fine as it is )

    Personally, I have been told by a Decision Maker that my Chronic Lymphocytic Leukaemia was ' stable ', this was due to the fact that I was not due to have chemotherapy treatment within six months.

    Mr Penning states that from Jan 28th 2013 the categories of cancer treatments under which a claimant may be treated as having limited capability for work related activity have been expanded ..... but that these new regulations do not apply to people with cancer who are not waiting for nor likely to receive chemotherapy or raidiotherapy treatment for cancer within six months.

    So the way I see how it works is this... chemo = immune system illness + kill or cure ( either way, problem solved )

    CLL = same immune system illness ... watch & wait .....problem remains .... sod off ! and get some chemo you scrounger ...

    The problem is therefore, the functional impairment of CLL means that with/without or even after any treatment he or she will still have a compromised immune system, as there is no cure. The patient will always have to 'manage' that compromised system, with neither he/she nor a Decision Maker being able to tell how the functional impairment will react on any one day in the future.

  • You have very little chance, trust me ive already been there and tried 2 doctors. They wont do the form as CLL maybe incurable but for the main it is treatable. You also struggle to get anywhere with your life insurance company. Should you need to stop working you will need SSP then if you are longterm sick you can claim ESA.

    Its not a lot of help but honestly dont sit fustrating yourself for someting your not going to get !

  • Regrettably I have to say you're right Grizzlebear in relation to DLA generally. I personally couldn't contemplate applying under the Special Rules and hope I never have to. Importantly, relatives can actually apply for this on your behalf and professionally I've done so for terminally ill people but I have to say most were gravely ill.

    This guide gives an excellent idea of what is being looked for to qualify for the new PIP allowance which will replace DLA.

    adviceguide.org.uk/wales/be...

    Newdawn

  • Thanks everyone for your replies, it is a minefield and for someone who is already struggling with the emotional, mental and social effects of having CLL, I wonder if it is worth even bothering.

    It's just another BATTLE that i am just too tired to even think about fighting.

    best wishes Anne

  • Hi Anne,

    I agree it seems an impossible battle to fight, when you're already feeling wounded...

    But sometimes there are others who can do the fighting on your behalf. I think Kwenda and Newdawn's idea of contacting Macmillan, and asking for a qualified Citizen's Advice worker to take up your cause, would be worthwhile. Some of these folk are excellent, and can fight your corner for you.

    Wishing you all the best,

    Paula

  • Hi after my husband was refused a blue badge, he has Parkinson's, although they acknowledged he had some difficulty in walk it was not bad enough to warrent a blue badge, he was advised to apply for an allowance. This would help us financially as he has gone part time. We had to apply for the forms but was told under no circumstances to fill it in. Someone came around to us (I think from the Parkinson's Group) and filled it in but it took several hrs. Its been several mths and we still have not hear anything. My husband was advised to phone and he was told it can take 26wks to process a form. This gives you some idea of the process. Best wishes and good luck.

  • Jan, 26 weeks is outrageously excessive to process any application so I'd check that yours hasn't been overlooked in some way.

    With DLA, they give a guesstimate of 40 working days. I've filled in scores of them (groan) and have never known the original application to take that time although subsequent appeals can drag them out.

    Edit;

    I've just looked at the new Personal Independence Payment (PIP) applications and it would appear that they are taking an excessively long time to process new applications so it could be that allowance that the Parkinson's Group applied for on your husband's behalf. The only good thing is if it's successful, all payments are backdated. The new PIP is frankly a nightmare and now replaces DLA for new applicants and all existing people on DLA will be reassessed for it. They estimate a significant proportion of applicants will lose or have eligibility reduced.

    And I agree with stunned, it's a nightmare process for people who are not well and can do without the stress particularly as PIP can now involve personal interviews/assessments.

    People over 65 still apply for Attendance Allowance and are not eligible for the mobility component if applying after that age.

    Regards,

    Newdawn

  • Whilst I cannot comment extra on the discussion regarding government bodies I can make one observation.

    When looking at Insurance companies for travel insurance I noted that 'no cure' was interpreted to mean terminal as well. Seemed only to occur when situation favoured the insurance company. I can't remember the exact scenario but irritating and confirmed my cynical view of them!

    rob

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