Rosemary Bell has been a welfare benefits advisor for 40 years. She advises patients at the NHS Rare Mitochondrial Disorders service in Newcastle, and works for the Lily Foundation providing free over-the-phone support to mito patients and families nationwide.
Why is it important to provide benefits advice to mito patients?
The benefits system is complex, and people don't always know what they're entitled to, or how to go about claiming it. Wherever you turn there are lengthy forms to complete, and how you fill them in matters because it affects how your needs are assessed. There used to be advice centres all over the place to help people with this, but welfare benefits advice has been badly hit in local authority cuts. This is happening at a time when Disability Living Allowance (DLA) is changing to something called Personal Independence Payments (PIP), and anyone currently on DLA has to fill out a form to claim PIP. So you have vulnerable patients, who are perhaps housebound and coping with cognitive problems or vision impairment, receiving a 40-page form in the post and not knowing who to turn to for help. That's where our service comes in.
What sort of help do you offer?
We help people through the whole process, from general advice to filling out forms and putting together supporting documents. For example, with the PIP forms, people sign the form and then send it to me along with a copy of their prescription list and recent clinic letters. Sometimes I might contact their clinic for the relevant documents. Then I'll call the patient and we'll go through the form together over the phone. You have to tick the boxes, a bit like a multiple choice quiz. This is where it really helps to have an understanding of mitochondrial disease and the sorts of problems patients have to contend with. Once we've filled out the form, I'll contact the patient's consultant and get them to write a support letter confirming the medical problems we've identified. Then we send the form off, and the patient will be called for a medical assessment.
Does the lack of public awareness about mito make things harder?
It can do, yes. Many benefits decision-makers and medical assessors aren't familiar with mitochondrial disease. They might have professional backgrounds as nurses, paramedics or ambulance staff, but they've had no experience with mito and don't understand how it affects people. Someone could present to them with hearing loss, diabetes and chronic fatigue, and if you're not familiar with mito it's easy to wonder how all that adds up. There's a whole gamut of symptoms and they aren't always obvious, so assessors who aren't familiar with it can doubt the veracity of a claim. That's why it's so important that we put in the letter of support from the consultant, because they will explain in detail what mitochondrial disease is. It's also why it's so important that charities like The Lily Foundation continue to raise awareness about mito.
Are all mito patients entitled to disability benefits?
No. Many are, but having a diagnosis doesn't always mean you're entitled to benefits. Every mito case is different, and what counts is the specific way that people are disabled by the condition, not the condition itself. Some patients are are barely affected, while with others it can be life and death. I'll normally be straight with people if it looks as though they just aren't going to get benefits, and then only after we've gone through the form in detail and looked at every area where they might be identifying problems. And if people are really disabled I will advise them on what to do in order to access the benefits they need.
Do patients have any recourse if a claim is refused the first time round?
Yes. With PIP, if you're turned down the first time you can apply for what's called a mandatory reconsideration. If the assessor has said there's nothing wrong with this person, we'll get a consultant – a neurologist or specialist in mitochondrial disease – to send another letter reasserting the severity of the patient's case. Often that does the trick. If a patient is turned down again, or if they don't get the full benefits we think they're entitled to, then you can go for an appeal. The good news is that 73% of all disability appeals are successful for the claimant. The reason for this is that while medical assessment companies have to meet targets regarding how many claims they reject, the appeal tribunals are independent, so if it gets to that stage you're likely to get a fairer hearing.
Do you offer advice in other areas, besides disability benefits?
Yes. We also help with things like carer's allowance, universal credit, employment advice, access to insurance policies and access to pensions. If I don't know the answer to something, I'll normally be able put people in touch with someone who can. A lot of people who come to me have been sick for a number of years and could potentially have been claiming all that time, so more needs to be done to educate people about the sort of benefits that are available. For example, people might think they aren't entitled to anything because they have a private pension, but that's not always the case. And then there's the myth that only one person in a couple can claim disability benefits, which is also wrong – you can both claim. So it's always worth checking to see what benefits you might be entitled to.
Should I tell my employer about my mito diagnosis?
It comes down to individual choice whether or not you tell your employer if you've been diagnosed, but they can't put things in place that could help you unless you're open with them. The first thing to do is to find out what rights you have. Read your company's sickness policy if it has one, and contact your trade union if you belong to one. Employers are wary of dismissing people with long term health problems, but it's a mistake to think you can't be sacked for taking time off sick without a proper explanation. People sometimes get upset when their line manager rings them up for information while they are off sick, when in fact they are just complying with company sickness policy. In my experience employers are willing to work with you when they are given the chance, so it's worth doing your homework and finding out what options are available to you.
What sort of help is available to mito patients in the workplace?
There are lots of things that can be done to make it easier for people with mito to continue in work. For example, if you suffer from chronic fatigue it might be that you agree with your employer that you can have a 15-minute break every two hours. Or if you're deemed unable to do your current job for medical reasons, employers have to consider other roles for you. There are 'access to work' grants available, where a team will look at your workstation and provide things like specialist chairs or computer equipment, or a taxi service if you're having problems getting to and from work. And if you are forced to stop working due to ill health, there might be a good pension scheme that will support you. These are all things that people tend to miss out on if they aren't open about their diagnosis.
Why are some people reluctant to claim the benefits they might be entitled to?
It's a very personal process. You have to go into detail about aspects of your life and finances. That can be particularly hard for older people, who aren't used to disclosing that sorts of information. Also it requires looking at all the negative ways the illness impacts your life or the life of your child, which can be a lot to face up to. Mito is a progressive disorder, and often people have adjusted to it day by day. It feels to them as if they are just getting on with things, when in fact they might be having serious problems with mobility, showering or basic household chores. I've seen patients who are so ill I honestly don't know how they carry on working, but they keep turning up because they're worried they won't have enough money to live on if they stop. The risk then is that if they do eventually apply for health benefits, there won't be anything on their record that says they were sick, because they've been turning up to work every day.
So it's important to seek advice sooner rather than later?
Yes. We understand it can be hard, but the support really is there if you choose to look for it. The consultants are absolutely wonderful. They treat patients as a person, not just as a claimant, and are very sympathetic to their situations. It might be that being in work is actually harming you or making your illness worse, and if that's the case your consultant will let you know. Likewise, if there are benefits or other types of support that you're entitled to, it's important to access those, as even small things can make a huge difference. Mitochondrial disease is hard enough to live with, so it makes no sense to deny yourself help if it's available to you. The support is there, and we're ready to help people access it.
If you need help with disability or employment benefits please email [email protected] to arrange an over-the-phone appointment.