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.


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


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