Bone marrow transplant patient could lose her Motability car under DWP rules

“Lesley” is petrified. She needs a bone marrow transplant at the end of this month. Trying to deal with Myelodysplasia – a serious blood disorder that causes a drop in the number of healthy blood cells – is tough enough already, and she is very anxious about the transplant. But now she’s worried she’ll lose her Motability vehicle at the very time she needs it most. The decision by the Department for Work and Pensions (DWP) to stop paying the mobility component of the Disability Living Allowance (DLA) or Personal Independence Payment (PIP) to the Motability Scheme when people end up in hospital for more than 28 days has added an extra level of concern.

The 47-year-old divorcee depends on the leased car for her 40-mile round trip to the NHS centre of excellence where she’s being treated. She expects to be in hospital for four to six weeks post-transplant. She has also been told by the hospital that she could be in again after that frequently as an inpatient and will have three visits a week as an outpatient. She’s advised that using public transport poses an infection risk post-transplant. She is unable to rely on family and friends who are at work for lifts, and can’t afford taxis.

The DWP tells people in receipt of DLA to let them know when they first go into hospital, and to tell them once they are discharged. They are then told to supply details of any subsequent inpatient stays. But “Lesley” says this just “adds to the stress when I just want to move on with my life – they are just putting obstacles in my way”.

She says Motability has been sympathetic to her circumstances and has said she can keep the car for a couple of months if DWP payments to Motability on her behalf are cancelled. But with the prospect of being in and out of hospital on the horizon for some time, she’s concerned that a possible pattern of stop-start payments may not be triggered quickly enough to ensure that the car is available when she desperately needs it. She believes that those with the most serious illnesses who have to spend longer in hospital risk losing out most under this change, which began in April 2013. “If I wasn’t very ill I would continue to get it (the mobility component), but because I am very ill, I don’t get it. In all the literature I am advised to not use public transport due to infection risk. How then would I get to hospital?”

Following the transplant her immune system is going to be “wiped out completely”. “If I travel (on public transport) with someone with a cold and I catch it, that would be extremely bad news – really dangerous. Getting public transport could effectively kill me yet I may be left with no choice. I have had to think long and hard about this transplant. All my family and friends work and I’m single, so cannot rely on others. It’s scaring me as it’s a dangerous procedure anyway and then I could catch a cold virus or infection from someone and die because I don’t have my own clean safe transport. The decision to change the rules in 2013 was a ludicrous one. Also I wasn’t warned about it when I started the car scheme. Suspending and reinstating the mobility component must cost a fortune in administration.”

There are two organisations which work closely together to deliver the Motability Scheme. They are Motability, a registered charity, responsible for oversight and Scheme policy, and Motability Operations Ltd, a not-for-profit private company that operates the Scheme under contract to Motability. A spokesman for Motability said in a statement: “To lease a car, scooter or powered wheelchair through the Motability Scheme, an individual must be in receipt of the Higher Rate Mobility Component of the DLA, or the Enhanced Rate of the Mobility Component of PIP. Motability has no role in determining who should receive disability benefits – that is solely the responsibility of the Department for Work and Pensions (DWP). In general, the DWP do not make payments of DLA care and mobility components after a disabled person has been in hospital for 28 days or more (84 days for children under 16). Payments resume once the disabled person comes out of hospital. From April 2013 onwards, the DWP has started to treat all hospital inpatients in the same way, whether they have a Motability vehicle or not. This means that if a customer spends more than 28 days in hospital, the DWP will stop paying the mobility component of the DLA/PIP to the Motability Scheme.”

The statement adds: “As soon as customers are admitted to hospital, they should notify the DWP of their change in circumstance. For hospital stays of more than 28 days, they or somebody acting on their behalf should contact Motability’s Customer Services Team on 0300 456 4566 to discuss their individual circumstances. Depending on the expected length of their hospital stay and, of course, their own preferences, we will discuss appropriate arrangements with them. Since this change was made by the DWP in April 2013, we have been contacted by a number of customers in this situation and have been able to leave cars with them in the expectation that they will come out of hospital and have their allowance reinstated by the DWP within a reasonable period.”

The DWP was approached for information about the cost of administering the change and the savings made since the change was implemented. It was asked how many disabled people had been affected after stays in hospital and if any cost/benefit analysis had been undertaken prior to the change. It was also asked if any challenges or complaints had been received, and whether there was a legislative basis for the change. No reply has been received to date.

Motability’s flexible and understanding approach to individuals affected by this change is admirable – but what happens if the person is unfortunate enough to need a series of extended hospital stays and the DWP isn’t paying for the car? The uncertainty involved isn’t making “Lesley’s” life any less stressful. Also, for how long will Motability continue take the financial hit as it strives to do the right thing?

‘Elizabeth’, her sick husband, and the knife

Health secretary Jeremy Hunt is appointing a new NHS director of costs. His job, says Mr Hunt, will be  to help the health service ‘get better’ at charging immigrants who are already in Britain, but not eligible for free treatment on the NHS. The coalition’s position is that short term immigrant and foreign visitors should pay more than £500m a year towards the cost of their NHS care.

Let’s look at the account of one woman who came to our London food bank a few days ago, and who happens to be making an immigration application.  ‘Elizabeth’ (not her real name)  came to the UK from Nigeria with her husband in 2010, and she is the quietest, saddest-looking woman I’ve seen for a long time. She brought her baby boy of seven months, who was fast asleep.

In a voice that’s no more than a whisper, she slowly, painfully, tells me her story.  I desperately hope that this is the worst account from a food bank client that I ever have to pass on.

Both Elizabeth and her husband have been renewing their visas while they try to negotiate the immigration application process. They also have two older children  – a girl of eight and a son of five. Elizabeth says: ‘My husband is in hospital. He has depression and he’s had it since 2010. He was working for 20 hours a week, and was also a student. But the rules changed and he wasn’t allowed to work. He was studying to be an ACCA (chartered accountant), and he has passed the first stage. But he has been in hospital now for over a month.’

How do they all survive, now that he is unable to work? ‘My maternity pay is the only money coming in. I get £278 every fortnight, from my job as a support worker for the elderly. A social worker is getting involved now, and is looking at whether there will be any financial help with regard to the rent.’

Why has a social worker suddenly intervened? Elizabeth tells me of the terrible circumstances which led to her husband being taken into a mental health unit as an in-patient recently: ‘He tried to commit suicide. I called the ambulance. My eight year old daughter got me a knife and I cut the rope.’ This poor woman’s daughter saw everything. By the time she’d reached the end of the account she had broken down and was in tears.

The stress this woman is going through, along with three small children, is horrific. Elizabeth’s GP was able to ease things a little by giving her a voucher for the food bank. We were then able to give her an emergency supply of food, including some nappies. She stayed with us for quite a while that afternoon, and I hope that talking to us about this almost unimaginable trauma, helped her – even a little. At least  – small comfort – she was able to feed herself and her two older children that weekend. She is still breast-feeding her baby.

I’ve been thinking a lot about Elizabeth and her family this week. Let’s hope that he responds well to the treatment he’s receiving. I’m not completely sure whether she and her husband have ‘temporary migrant’ status – It looks as if they do. What is a ‘health tourist’? Is Elizabeth’s husband one of those? If these new proposals supported by Jeremy Hunt do make their way into law – the Immigration Bill was passed yesterday by 303 votes to 18 – at what point during his recovery would some NHS doctor have to present Elizabeth’s husband with the bill for his treatment?