Loopy Lupie

As you will have gathered if you have read my story and my struggle through university, life is not exactly easy.  Luckily I have had a lot of help along the way.  This page is devoted to that and the help that is out there in the UK.  Unfortunately all is not as it should be and any way that you can help, for example by bringing some of the issues raised to the attention of your MP, particularly the lack of care and wheelchairs, will be appreciated.

For many people, wheelchairs are a sign of disability and sadness. For me they are a symbol of freedom and independence.  A lot of people have trouble accepting them.  For me, using a wheelchair is no different to wearing glasses.  My body doesn't do something quite as it should so I use a piece of equipment so that I can still do what I want to do. Without them I am housebound. With them I can get around once more.  With cities becoming more and more wheelchair friendly, using one is becoming less and less of a problem.

My first wheelchair was a manual wheelchair named Zippy and served me very well.  It is worth trying to get a lightweight wheelchair.  It is far easier to get in and out of the car.  It is easier to push and to manoeuver.

My condition did continue to deteriorate though and I have now bought an electric wheelchair I have named Roadrunner.  I love Roadrunner and the freedom he brings.  He goes faster than walking pace and I really enjoy zooming along.  I have had a few incidents along the way, which you can find on my other website...

Finally I have now been given a little indoor electric wheelchair by Access to Work, to get around the maths building whose small doors and lift made it very difficult to get Roadrunner around!

There are places you can borrow wheelchairs on a short term basis, like the Red Cross.

To get one of your own, you will need to be referred to wheelchair services, usually by your GP.  You will be assessed as to what type of wheelchair you need.  Be aware that there is often a long waiting list.  In my case it was 6 months for a manual wheelchair.  The waiting time for an electric wheelchair (which I was not entitled to) was 18 months.  Because of a lack of funds, most wheelchair services do not provide electric wheelchairs unless you are unable to stand at all.  This means that even if you can't walk for more than a few yards and can't push your own manual wheelchair, you still will not be allowed one.  Even if you decide to buy your own, you will receive no help whatsoever in finding one to suit you.  Be aware that electric wheelchairs cost anything from £3000 to £10000.  If you think you will need one in the future, it is best to start saving early on.

Having a wheelchair can have a huge positive effect on your life.  I am much distressed by the lack of support and money is available for this vital aid to freedom and independence. 

The main benefit available for people who are disabled is Disability Living Allowance (DLA).  This has two components: a mobility and a care component.  The mobility can be paid at a lower or higher rate, while the care component has three rates.  Which ones you qualify for will depend on your level of disability. 

DLA is a very useful benefit to have if you can get it.  It may help cover the extra transport costs if you are unable to use public transport, or it could be used to have someone come in and help with the cleaning chores that are becoming too difficult for you.  It is one of the few benefits that is not savings related, so you get it regardless of your financial situation.  It is entirely dependent on your disability.  You do NOT have to have a diagnosis to receive DLA.  It is awarded based on the effect of the illness.  This also means that if you have a disability but have learned to work round it (for example by having an artificial leg) then you may not be entitled to anything.

Here is a link where you can download DLA forms:http://www.dwp.gov.uk/lifeevent/benefits/disability_liv_allowance.asp

Receiving DLA often means that any other benefits you may be receiving will often be increased (for example Income Support or housing benefit).

If your disability is having a severe impact on your ability to manage to care for yourself, then help may be available from your local social services.  A social worker will be assigned to you and after assessment will identify areas where you would benefit from help.  Unfortunately, money is tight right now and you may not always get what you need.  But help is definitely available, and is something worth looking into as it can make a huge difference to your life.

It took me a long time before I would accept the help I needed.  I did not like having someone help me to cook, or to wash or to clean.  I was angry that I could no longer do these things myself.  But I soon realised that this was in fact a godsend.  Lupies have very little energy to spare.  By getting that help I could now use my energy for useful things like work, or social activities.  This would be impossible for me without the help that I get.

So if you do feel you need help, contact social services.  There are two ways of receiving care.  The old way is for social services to employ a care agency who will send people out to you.  Be aware that these agencies are not always as reliable and good as they should be. 

The other way is to receive direct payments which means you get paid the money and decide who to employ yourself.  However this means that you are a small business in the eyes of the inland revenue and sorting out tax can be quite difficult.  There are people to help you with that and you should try not to let that put you off.  There are restrictions on who you can employ.  For instance you cannot employ a close relative who lives with you.  You will also have to keep good accounts and send a record of what has been used to social services every few months.

If your illness has resulted in physical disabilities which are making working difficulty, help may be available from Access to Work.  This is a government scheme which helps cover extra costs due to disabilities.  They will cover up to 100% of costs for new employees and up to 80% for existing employees.  They can be contacted via Job Centre Plus.

In my case, I was given extra money to cover extra travel costs, an indoor wheelchair for use at work, a sofa so I could work lying down and money to pay for a notetaker at seminars and conferences.  It is something well worth applying for.