Saturday 5 March 2011

The Final Countdown

It has been a truly hectic week for all here at The Broken of Britain Towers. We have been putting the finishing touches to a new national campaign that launches on Monday. The campaign will aim to oppose those provisions of the Welfare Reform Bill that are 'anti-disability'. There is a lot of support for this campaign, and we know that you will hlp us make it a success.

As part of the campaign, there will be a debate in Westminster Hall on the reform of Disability Living Allowance on the morning of the 9th of March, a couple of hours prior to the Second Reading of the Welfare Reform Bill. The Second Reading is the first opportunity for the House of Commons to debate a Public Bill. This means that the debate at Westminster Hall, from 9.30am - 11am, will give MPs a reminder and primer on the issues to raise regarding Disability Living Allowance.

Finding an MP willing to request a debate at such an opportune timing was a major coup, and we hope that many MPs will participate. I will be briefing the organiser of the debate, Hywel Williams MP, early next week, so that he can decide which issues to discuss and where he wants to steer the debate. For this briefing I will need your help and input, so that I can suggest points to be raise from all disabled people and not just myself.

Please visit The Broken of Britain forum to leave your suggestions on points you want to see raised during the debate.

Thursday 3 March 2011

Free At The Point Of Care, But Only For Some #TBofBTT

by Margo Milne (@MargoJMilne)

Not everyone with a disability is also ill and in need of regular prescriptions, but many of us are. As an example, here are the medications I need every day for my multiple sclerosis:

  • 3 painkillers

  • 1 bladder medication

  • 1 med for fatigue

  • 1 anti-spasmodic

  • 1 sleeping pill

  • ...and a partridge in a pear tree (or so it sometimes seems!)

Then there are the medications I take for the rest of my encyclopaedia of medical conditions: altogether 15 different meds, between one and eight tablets per day for each. If I could jump up and down I would rattle, so all in all, it's quite a good thing I can't!

The current prescription charge in England is £7.20 per item. In Wales and Northern Ireland they are free. In Scotland, they currently cost £3.00, but will become free later this year. I live in England, so I will consider only the situation here, and leave aside in this post the "postcode lottery" element of the differing charges between countries.

As well as MS, I have epilepsy. That means I get all my prescriptions free. The rationale behind this is that epilepsy is lifelong and potentially life-threatening. But the exemption applies not only to my epilepsy medications, but to everything. I've had prescriptions for a bottle of calamine lotion (over the counter cost what, about 50p?) to save me the prescription charge.

These medical exemptions are available to people with a few conditions other than epilepsy, including cancer, diabetes treated with medication, and any physical disability that means the individual cannot go out without help from another person.

There are many, many long-term conditions that are not covered by the exemption - for instance asthma, heart disease and Crohn's disease, all of which can be terribly disabling. There is evidence that high prescription costs lead to many people going without the medications they need:

  • In 2007, 800,000 people failed to collect a prescription because of the cost involved. People with long-term conditions are particularly affected.

  • 34% of people who have to pay for their asthma medication sometimes choose not to get it because of the cost.

  • 38% of people with severe mental illnesses like schizophrenia have to choose between paying household bills and paying for prescriptions.

A GP is quoted as saying:

It's not unusual for patients to ask me which prescription is really important, which one can they get now and which one they have to wait maybe two weeks before they get their pay cheque.

I believe that prescriptions should be free for anyone with a long-term condition. Already over 89% of prescriptions are free, with no charges for children, pensioners, pregnant women, and people whose income falls below a certain level. It seems inequitable that (say) a wealthy pensioner or pregnant woman is entitled to free prescriptions, while someone with disabling heart disease whose income falls just above the cut-off point is not.

The Prescription Charges Coalition brings together 24 charities, and calls for the Government to abolish prescription charges for everyone with a long-term condition. They have a petition, and a template letter for you to send to your GP. If you agree with me that prescriptions should be free for everyone with a long-term conditions, please click on the link!

Tuesday 1 March 2011

Learning Curve #TBofBTT

by Claire Lewis (@SpinalNurse)

As an Able-bodied person I don't not profess to 'know' how it must be to live with a disability. However I wanted to share my learning curve as a 'professional' and how it has changed the way I practice.

From a very early age I've always had a notion of 'helping' people. (Don't groan I was young and didn’t have the vocabulary, I still don’t!) This first manifested itself at the age of 14 deciding my options for GCSE. At that particular time living in North Wales and keen on Rugby I announced to my family that I wanted to become England or Wales' Rugby Teams Physiotherapist. Nothing to do with the gorgeous men of course! To cut a long story short I wasn't academically gifted enough so after retakes and a slight career change ended up Studying my Nursing Degree at age 25. During my time as a student nurse a colleague suffered a spinal cord injury (SCI). Knowing nothing about SCI and not being stretched enough by my nursing course, I embarked on finding out as much as I could about SCI as I could. This led me to find a charity that takes people with SCI skiing (a real passion of mine) so I immersed myself in the world of SCI. Although being involved in healthcare for the previous 6 years I'd only really come across people who were ill. Going away skiing with people who were well but had a disability opened my eyes to a completely different world.

Initially, as happens with all Able bodied (ABs) on the course. I had the 'fear' the reality check, the 'this could happen to me at any minute' moments. It kept me awake for the first couple of nights. Then slowly as the week progressed I realised hang on a minute these are normal people just like me. They just happen to no longer be able to use their legs. THEY ARE NO DIFFERENT TO ME. And there it was Disabled people are NORMAL.

Obviously 10 years on I realise Spinal cord injury has lots of issues other than not being able to use your legs! What I found by sharing time with people, who were just like me, was the constant question. 'How would I want to be treated. I'm an adult and fiercely independent I can make up my own mind, Why on earth am I going to let someone else tell me what THEY think is best for me.
Naively I thought 'well people are more clued up about disability now' I couldn’t have been more wrong. Now a qualified nurse I cringe when I hear 'professionals' responses to people who have a disability. If so called professionals can't get it right what hope the rest of us!

I am the first to put my hands up and say I don’t always get it right, I don’t always know what is the best option to empower my patients to enable them to be more independent but when I don’t know I ask. I don’t presume or assume I know best.

I changed the way I practiced by very small steps really, nothing profound. I would be more aware of bringing things closer to the reach of a person on bed rest. I could observe closely during Drs rounds that the patient had understood what was being said and try to simplify medical jargon. I would ASK and SPEAK to the person. I wouldn't talk across them even if they were children and even if their parents/ partner/ family were dead set that I should be addressing them rather than the patient. I bloody well made sure my eye contact was with the person concerned. I asked permission from the patients. I asked what I should be aware of, how does their pain affect what they can do and how I hold/support them. How does fatigue affect them? Not to get annoyed because this morning she could do this but this evening she can't.

I know to many, this may seem like common sense but you only have to sit on a busy ward for 30 mins to observe it doesn’t always happen. Some of the ignorant comments from colleagues mouths at times has astounded me and taken every ounce within me not to bite their heads off. But to gently inform and enlighten!

Unfortunately it takes a lot of insight to know even a fraction of the problems and struggles people with Disabilities face every single day. I try to think ahead about what someone will need so that they don't have to ask it's just there or it just happens. Importantly understanding that like me everyone is different and what might be a good routine for one person totally doesn’t suit another. People don’t ask to be disabled, People don’t want to have to ask for help if at all possible. But sometimes you have to ask for help and sometimes it would be nice to have someone who at least doesn’t huff, puff and moan at helping. It's the least we can do isn't it? A little bit of understanding goes a long way.