A Letter to my MP

I have a problem… not medical this time, but financial…

I began receiving Disability Living Allowance [DLA] when I was first diagnosed three years ago. The initial period for the welfare benefit was for three years, after which time I could reapply… I have recently reapplied.

DLA forms The Department for Work and Pensions [DWP], who manage these benefits, sent me a renewal application form to complete a few months ago, but I struggled to deal with it for a number of reasons.

When I finally did manage to complete it, with help from Chris, the Benefits Advisor at Maggie’s Centre, I misunderstood the date by which it needed to be sent in and it arrived after the date the initial claim ran out.

When I called to find out what was happening with the claim, I was advised that because it had arrived late, the original claim was now closed and the new claim had been passed to a new benefits section called Personal Independence Payment [PIP].

When I called the PIP section, I was advised that my claim was not yet on their system and that once it was, it could take anything up to six months! to be processed. During this time, I would not receive either DLA or PIP.

OLYMPUS DIGITAL CAMERAThis has a knock-on effect, as I have a car leased through Motability, a UK charity that uses the mobility portion of DLA to pay for the car lease at a reduced cost. It also includes car tax, insurance, servicing and if necessary, adaptations to the vehicle for people with various disabilities. Without the DLA payments, I will lose the car, which will have a hugely detrimental effect on my day-to-day life.

blue badgeAdditionally, being in receipt of DLA at the higher rate for mobility gives automatic entitlement to a Blue Badge for Disabled Parking. Without the DLA, I can apply for the badge, but the decision is conditional, so I will have to go to a lot of extra effort, getting letters from my GP and Transplant Co-ordinator to send in with the form.

The woman I spoke to at the Benefits Centre was calm and surprisingly supportive, but obviously has no power over the legislation, nor the staffing of the PIP processing section to shorten the time for my claim to be dealt with.

I had a moan to some friends and a number of them suggested I write to my MP, so this is my letter to Anna Soubry MP. Of course, I will report back on the outcome.

Dear Anna

I would like your support with a problem about a claim for DLA/PIP. Due to a delay in returning my DLA application form, it was referred to PIP. I have been told that the PIP claim may take up to six months to be processed. This is unacceptable and very distressing.

I am unable to work and have been in receipt of ESA (Support Group) payments and DLA (High-rate mobility/Mid-rate care) for three years. I recently received confirmation that a claim renewal application for ESA was granted. I am pleased to say that this matter was dealt with very promptly and efficiently.

I received the DLA claim renewal application in September 2013. The delay in returning it was my own responsibility, caused by a number of factors:
– fatigue and the difficulty I have concentrating and focusing on administrative tasks.
– thinking that my claim ran out at the end of February, when in fact it ran out on 16 Feb (an issue with retaining information due to cognitive difficulties)
– I did not complete the form sooner due to the changing nature of my disability over the past months
– dealing with new treatment has occupied my time, energy and cognitive abilities.

I am dealing with:
– multiple myeloma and its treatment (diagnosed in Feb 2011)
– a donor stem cell transplant [SCT] in May 2012
– Graft versus Host Disease [GvHD], an expected effect of a SCT, but impossible to gauge how, when or to what degree a patient will be affected.

The effects of the above issues cause:
– physical limitations – breathlessness and limb stiffness/inflexibility, both of which affect my mobility
– fatigue
– cognitive impairment, which affects my memory, concentration and ability to think clearly, read, retain information and carry out basic administrative tasks
– a compromised immune system, meaning a higher than average risk of infection and a harder task to treat any infection that occurs
– anxiety and depression, due to facing the prospect of an early death, dealing with a chronic life-shortening disease, fear of relapse and infection and adjusting to a compromised life.

I currently lease a Motability car, paid for by DLA mobility payments, which I will lose if I do not receive DLA/PIP. The DLA payments have also allowed me to pay for a cleaner, without whom I would struggle to maintain a clean home, as the bending and stretching required to use a hoover or change bed linen, for example, is very difficult and painful for me. Even washing dishes and food preparation has to be done in short bursts, before I am in pain or too tired.

Without a car, I would be too tired by the simplest of journeys to accomplish anything once I reached my destination, let alone the increased risk of infection from regularly travelling on public transport. I would also become further isolated as I would not be able to easily access places where I can meet people and get support. I just would not be able to go to certain places as the energy, time, planning and motivation to do so would be too much.

For example, if I go to Maggie’s Cancer Support Centre, based at City Hospital, where I receive a lot of relevant support and companionship, I would need to walk about 20 minutes (or longer if my legs are bad), getting out of breath in the process, to catch a bus to QMC, then take the MediLink to City hospital. The whole journey would take about one and a half hours, in normal traffic.

At present I attend hospital twice one week for treatment and once the next week for clinic and line flush. While I can claim for bus travel or car parking to get to the hospital, they will not cover the cost of a taxi, so getting to hospital appointments would not be possible by taxi.

For a 10:00am appointment by bus, I would need to leave the house around 8-8:30, which means my journey would take longer due to rush hour traffic. It takes me a long time to get out of bed, washed and dressed, due to the stiffness in my arms and legs, which is worse after sleeping or resting. If I had to leave the house that early, I would have to start getting up around 6-6:30am.

Even if I cannot receive the PIP/DLA payments for six months, I would hope they would be backdated once the claim was agreed, in which case I would be able to manage with help from my family in the interim, but if I lose the car, it will have a hugely detrimental effect on my day-to-day life.

I can give more details if you need them. And while I still have the car, I can get to a surgery at any location in Broxtowe if you agree to meet with me.

I look forward to hearing from you and hopefully receiving your support with this matter.

Regards

I am pleased to report that very shortly after I sent this, I received the following in reply:

Thank you for your email, though I am sorry to hear of your concerns regarding your PIP claim. I am happy to make further enquiries with the DWP regarding your claim (and in particular whether any claim could be backdated). I will however require your national insurance number and date of birth.

I have copied [my assistant] into this email and if we require any further information, I am sure that she will be in touch with you.

With best wishes

Anna

I have no idea whether to feel hopeful or not, but a prompt reply is a good beginning.

About Jet Black

I began blogging because having been diagnosed with Multiple Myeloma, I wanted to share my experiences of living with an incurable cancer. Through blogging, I discovered that I enjoy writing. I have always chosen to live life for the journey, more than the destination. This is as true for the act of writing as it is for living with myeloma, so these are two things I do: I live and I write!
This entry was posted in * Myeloma, Graft versus Host Disease, Miscellaneous and tagged , , , , , , , , , , , , , , , , . Bookmark the permalink.

18 Responses to A Letter to my MP

  1. bev says:

    These types of programs, whether in the UK or US, usually make allowances for people who due to physical disabilities cannot get their timing or forms right. They usually ask for a doctor’s note, which we know you can get, stating the disabling factor that made your form late. Then they can re-open your previous claim…they could have told you about these allowances and what to do. Or it may be in a mass of paperwork they gave you in the beginning claims process…I am praying this will all be worked out, as it is not for you to worry about and in others’ hands now.

    On another note–with all of this medical going on, how is your list going?? Have you been able to mark any of those less physically demanding off on your to do list? I will have completed my Masters degree this August, and as suspected it will do nothing for my disability or homeless status because I still cannot work a job…I still have the dream of finally getting a little plot of land, and maybe making it an animal refuge and then add people who need help and we can all help eachother…nice dream, huh?

    Like

    • Jet Black says:

      Unfortunately Bev, the way our benefits system is being deliberately eroded by our current heartless government, it is unlikely that anything as simple as you suggest will be possible.

      As for my list, I have ticked off quite a few items, but not found time/focus to write about it yet. I do hope you get to create your ranch. x

      Like

  2. bev says:

    PS. YES–feel hopeful, always feel hopeful! :)

    Like

  3. cat says:

    everything crossed petal.

    Like

  4. Mavis Nevill says:

    So sorry you are having this difficulty. I think these Departments think it is there mission to prevent easy access to benefits. Do hope you MP is able to help. Keep battling on!
    Mavis x

    Like

  5. Jet Black says:

    Thanks Mavis. x

    Like

  6. mary says:

    I am a caregiver for my husband who has mm. I was negligent in submitting the paperwork for assistance to the lls by the date due. It was my fault. I misunderstood the timeline since they changed our calendar year. He cannot concentrate enough to help and with me working full time and helping with all his appointments, etc., I didn’t read thoroughly enough. They do not backdate. It cost us 5 months of help with insurance premiums. Lesson learned. I read everything now, more than once!

    Like

    • Jet Black says:

      Yes, it’s tough. I wouldn’t expect backdating to the end of the first claim, but to the beginning of this one. If it takes six months to process and they agree it, then I would hope and expect it to be paid from the date they received it, not just the date they agree it.

      Like

  7. As it’s only a matter of a couple of weeks your MP may be able to prompt them to continue your claim. It depends on how officious they are being about it.. Fingers crossed for you darling. xx

    Like

  8. bembeezled says:

    I really hope this all gets sorted for you Jet. I think a lot of people, unfortunately, don’t really understand the financial impact of chronic and serious illness and are bound up by all the “red tape”. Fingers crossed it gets sorted a lot sooner than in 6 months time.

    Like

  9. Morag says:

    They do usually backdate but that’s no help while you have to manage without! I found the DWP responded very quickly to an enquiry about DLA by my MP, Vernon Coaker. Good luck, hope it gets sorted soon, and as always call on us if we can help. xxx

    Like

  10. cedawnow says:

    I’ve been caught out by this timing thing and got onto my MP straight away, I have not recieved any response as yet, How long did your MP take to get back to you?

    The DWP said that my DLA claim was to be treated as a claim for PIP and I’m now wondering if I should be contacting PIP because how can a DLA claim be treated as PIP when the descriptors and points system are different.

    Why is some officious little bod at the DWP deciding that being a few days late with a claim warrants being considered a totally new claim. I swear this lot are trying to wear us down to the point that we just give up.

    Like

    • Jet Black says:

      Yes they are. You’re spot on and no flippancy intended. That IS part of their budget-cutting strategy, for sure.

      Call your MP’s office. Don’t wait a moment. Mine has been very helpful, well the case worker at my MP’s office. And yes, contact DWP about your claim. They may accept your DLA form in lieu of a new PIP form. They did with mine but later there was a hiccough when my claim was delayed as they didn’t have a PIP2 form. I had to get stroppy with them. But it worked. You’ll find the individuals on the phones at DWP very pleasant if not often able to move things forward. But speaking to them is less of an ordeal than you might fear. Good luck!

      Like

      • Cedawnow says:

        Cheers for getting back to me. I did finally get a response from my Labour MP who passed me onto someone who she said knew more about welfare issues than she did. He duly contacted me to regurgitate stuff I could have got from the .gov site and to say DLA doesn’t exist anymore. I politely told him he wasn’t correct and then his ego went into overdrive telling me I was wrong blah blah blah could send me the regs. Again politely told him I had read all the regs, that I understood them and we could go back and forth but clearly I wasn’t going to get any help. This seemed to send him into a tailspin with THE most patronising response.
        I now feel stressed and angry all over again I haven’t got the energy to get into a peeing contest but it seems it’s more important to think he’s right than actually consider someone might actually know more than he does! So despite being advised by DLA Blackpool to get in touch with my MP she has been as much use as a chocolate fireguard. Which has only been made worse by not being able to speak to anyone higher up in Atos than a receptionist.
        So I’m if I’m lucky I’m stuck in a PIP queue with no car for the foreseeable or unluckily I’m not even in the PIP queue.

        Like

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