The good disciple method of social care.

Summary

Drawing on parallels between early Christian/Jewish Disciples and current social care education settings. I explore the notion that teachers/educators/advocates place too much emphasis on reading, writing, publishing papers, attending conferences and web events …. to the detriment of good practice.I look at how to become a follower and put the ‘DO’ back into social work and personalised care.
Re written from an article I self-published in 2011.

Introduction

I was drawn to an article back on 2011  responding to a person who asked “Can we trust the message in the Gospels of Christianity”.  They were concerned that the biblical events were written down quite some time after they occurred. The reader wanted to know if they are truthful / accurate having being passed on by word of mouth initially.

 sermon on the mount
What surprised me was that the response to this article made me instantly think of how people learn and share information today – particularly within social care systems.
Throughout the early history of most cultures, information was passed on to generations of people through drawings, stories, dance, music, narrative, observation – long before written communication developed or became the main method or data preservation. People passed on skills through none written methods – and very effectively and accurately over thousands of years.
We might do well to relook at how  we learn and take it back out of the classroom and into real life.

I am going to highlight two of the parallels. 

It’s a cultural thing – we place heavy value on written works in the 21st century.

“Jesus never thought it important to scribble down a scroll of his greatest thoughts and leave them for posterity…. We live in a world where every leading thinker, teacher, politician … is in a desperate rush to record their views, insights and opinions for the benefit of the rest of humanity”. [Christianity Magazine: accessed 8 SEP 2010].

More often than not I was asked, as a social work educator/lecturer, to read and soak up every Green Paper, White Paper, policy document, book, journal article, news story / media article there was and condense it into a training session ‘to inform staff of the most important parts’ on some topic to do with social care.

I was asked to condense everything there is to know about Direct Payments or personal budgets into a few hours training time and spit out fully confident and knowledgable staff ready to convert those that live in the sin of dependency!

Social work students are told to read, read and read …. then listen, listen and listen again to lectures. Yes, placements occur – but they come with the burden of a whole stream of documentation and ‘writing it up’ or examining people on a well written essay. Those who are qualified are over burdened with forms and reports – spending less and less time actually visiting and getting to know and understand a clients situation.

We read and write ourselves to death. We Tweet, we blog, we Scope, we update our status and we think we are doing humanity a favour. We like to display our knowledge – our power. We like to think we are important and the more people who follow our blogs the more it boosts our ego? The more reTweets we get, followers whom we gather the more we show that we rub shoulders with the best? Is this networking or merely boosting our ego over and over again. I’ve seen a lot of ‘I shared it first’ syndrome and so many blogs are just a regurgitation of the same old thing – within social care information its no different.

We need to share information and learn from the best – but does our use of communication risk dragging us down and making us less productive or useful than ever?

I would rather a social worker who can DO rather than one who makes notes of every detail beyond the call of duty. Unnecessary details. Did my care plan really need to document I had 4 guinea pigs? Apparently it did.

We all know ‘form’ syndrome is not helpful. I would rather an adult service manager who demonstrates their management abilities other than to spend all day writing more sets of instructions to follow. I’d rather they acted on what they knew – and didn’t just pride themselves in being able to quote great chunks of disability theory at some higher level. Name dropping Finkelstein or Beresford during every conversation is not helpful – and I’ve known quite a few managers who have done this in the past.

Be a follower

The ancient way was for followers to have a relationship with their rabbi (and fellow learners) to do just that – follow every footstep, observe every practice.

“They watched their rabbi’s every move, noting how he acted, thought, responded in every given situation. They worked passionately to incorporate his actions and attitudes, as well as his words, into their lives. A disciple’s deepest desire was to follow their rabbi so closely that they would start to think, and act, just like him.”

We can take a lot from this. Social workers do not appear to get paired up with someone who is a good teacher – someone who is passionate and can show them what doing a good job looks like.  I saw new social workers who were being teamed up with others who were already tired and worn down to the ground. They barely had enough time to do their own work never mind support a new person. It’s that old expectation to hit the ground running – on your own.

Let’s look at personalisation, people have been given new jobs, new roles, new responsibilities and often a new place to work from (or working from the boot of a car). There is nobody to follow, learn from, observe because what they are being asked to do is like nothing they have ever done before. Social work and health care staff are left to rely on trying to fit in more reading or go to snapshot training events – and we wonder why personal budgets / health budgets are not happening for people.

Don’t just write about it – do it. There is no movement without ‘move’.

Christianity, like many other faiths, is a ‘living faith’. I always think it’s what you do on a daily basis that is important and not how many times you have read the Bible or been inside a Church. The way we live our lives is something that we can pass down to our children or be a role model for others – we are all teachers in that respect (for better or worse).

This passing down of knowledge, attitudes and behaviours is what occurred prior to the writing of the Gospels. The importance of passing down knowledge in many ways (song, dance, art, stories etc) can be found in many cultures whether it is how to prepare a ceremonial feast or skilling someone up to find food. You won’t find a twenty page policy on why the skill is needed, what the aim is, how to do it, who can do it, what not to do and a glossary of other notable texts to substantiate the document. What was important for a rabbi was:

“whether his apprentices had wrestled and engaged with his teaching on a personal level – did they really understand”. As opposed to whether they could recite chunks of text.

How true is that of social work? Many people recite the social model of disability but clearly have not understood it because of the resulting action or inaction? How many social work staff can recite ‘freedom, choice, control, flexibility, dignity’ in care yet fail on all accounts to make it a reality for disabled people?

It is all evidence that people have not successfully engaged with the ethos and practice of good social care. Staff are still refusing a disabled person who wants to spend their funding (personal budget) on going to a hairdresser – yet allow the same amount of money to be spent on a carer to wash the person’s hair at home because that is more ‘traditional’ or ‘familiar’. For those who can’t see their errors in thinking, throwing social care staff into a listen and learn environment or telling them to read something is not likely to work. They need to become a follower again. It’s uncomfortable, it strips you of your power – but it is needed. It is from this position that we build ourselves up just as the disciples did, to the point where we become the one who teachers the next generation and each other.

User participation fails again

Last year I moved from being funded by the council to being funded by the NHS. I employ the same Personal Assistants, just the funding has changed. Most people who qualify for a Personal Health Budget (PHB) like this have to meet challenging criteria needing daily health care support.  I’m a big fan of personalisation – probably why my working life was always in this field. If done right, with good information and support, it can really help people have a better quality of care and support. For many it can be life changing.

When I was told I had met the criteria I was asked if I wanted to take part in peer support or consultations about using PHBs. I’m all for participating in things to help more people use a PHB so I agreed to be a contact.

Early February I was contacted by Skills for Care to review their online information for people who employ Personal Assistants and use a health budget. For participating they would pay me £15 an hour for around two hours of ‘work’ spread out over about 3 weeks.

I immediately said I was interested.

and so followed:

  • A 14 page participation policy
  • A 3 page form to detail how I found the online information I would review (the ‘work’)
  • A 4 page payment form to complete
  • A warning that I needed to seek benefit advice as a fee would be involved.
  • If I participate I become an Advisory Group Member.
  • A note to go to the HMRC website and fill out a employee checklist for tax and NI.

On that note, considering I am in receipt of benefits because I can’t work and all I wanted to do was provide a review of their PA resources, I’m out.

How can people participate when faced with all this. It’s too much. Too exhausting. 

If I do the above I could be viewed as looking to take up employment – I’m not, I just wanted to review a website over a period and time I am able to. People on benefits can receive participation fees, as long as it’s not a long term thing that would indicate they could work.  All of the above might suggest I am working. I’m not taking a chance on that.

 

 

The future – A word that cuts like a knife

The future. Tomorrow, next week, Christmas, next Summer …. these words can be the harshest ones to hear if you live with a medical condition that is destroying your body. You might not make it into this future – and it hurts like hell.  I’m going to share with you how I make this hell a happier place to live – so if you want a totally doom and gloom blog then look away now.  Happy Back to The Future Day. 🙂


My different future.

You probably don’t realise it but people are always talking about the future. Maybe it’s planning a day out at the weekend, deciding on what food to buy for the week ahead, a forthcoming birthday, booking next year’s holiday, eagerly waiting for a favourite film to be released in the coming years.

The future can be the next minute, hour, day …. some people with life shortening medical conditions work though life one minute at a time – particularly when you aren’t ‘well’ or in a lot of pain.  Others work to weeks or years – everyone is different.

When you have an impairment, where your friends with the same impairment and age suddenly drop dead – it’s a very different sort of life. My life is characterised by not planning much more than a few days in advance where possible and being prepared to cancel plans on the day if I wake up and feel unwell.

Childhood perceptions of the future.

Parents of children with Muscular Dystrophy worry a lot about ‘the future’- maybe because there is so much emphasis on what a ‘normal’ life should look like e.g. walking upright, achieving at school, becoming an adult, getting married, earning a living etc. Once parents have a disabled child sometimes you can see they immediately grieve for the loss of their child being in their future.  I think this is instantly damaging – yes their child might die as a teenager but like me and many of my friends – they might also live to be 40 or even 50!! Oh yes, they might also graduate with honours, get married, become parents and earn a living …. so here is

 STRATEGY ONE: Don’t believe everything a Dr or medical book says. They can get it very wrong and lead you to fear what might not happen for many many years and restrict what you do in life.

I wrote myself off – back in 1985 I was 3 years and many falls into my diagnosis. People like me died when they were teenagers. I intentionally never played ‘House’ where you pretended to be a mummy in a make believe future, because that wouldn’t be my future. I’d be dead. What was the point. Yes a 10 year old child can think like that. As the years went by, I got nearer my late teens and didn’t feel like I’d be dead soon … actually, apart from not being able to walk very well and mostly using a wheelchair, I didn’t feel near death at all. So, I changed my mind and decided to live like I’d get to 100.

STRATEGY TWO: Death dates are rubbish – I ignore them! Don’t write yourself off too soon. The future is different for everyone.

When I was in my twenties I asked the Dr what age do people die now? He said in their early 30’s.

When I was in my thirties, I asked the Dr what age do people live to now? He said maybe 40.

Last month I was 40. I have lived long enough to be able to wear my grey hair as a badge of honour and a reminder to stick two fingers up to those Dr’s. I survived. I made it into the future they said I would never had. THAT is a good result don’t you think?  Good job I didn’t take their prediction too seriously.

Don’t waste time

Here is another time wasting trap that you can easily fall into – the search for a cure.

STRATEGY THREE: Don’t waste too much time looking for a cure … get on with life with what you have.

Maybe a therapy will be found, maybe not. Don’t spend days scouring the internet for the latest research each week, constantly campaigning for research or trying new drugs. Have a little read then get on with life. I see so many people spending hours and hours every week fundraising for a cure, reading up about research … all the time precious days and hours are wasting away just like your body. I’ve seen someone spends hundreds of pounds each week on a so called ‘miracle diet’.

IMG_0841
Snake Oil, targeted at people who fear their future with dystrophy. Diet alone is not going to cure someone – here is my diet tip when time is short.

STRATEGY FOUR: Eat what the hell you like or love and be happy.

Food is a pleasure for me. I love eating curries, chocolate and anything with the word cheese in it. Eating makes me happy. Eating is something I won’t always be able to do because MD eventually stops you being able to swallow.


So to hell with diets. I’m going to eat whatever I want – sensibly. I don’t want to put on weight or clog up my arteries – especially when MD can give you heart problems as well. I don’t want to accelerate my death but I’m certainly not going to hold back on things I love! I will be creating memories when I can no longer swallow and that is my way of dealing with the future.

Awkward conversations

It’s harder to join in with conversations when your future is unsure.

Imagine this one – you are at the hairdressers and they ask the classic “going anywhere nice on your holidays this year?”.  What a conversation killer to say, well actually this time next summer I might be too ill to go on holiday or might even be dead.  Even something as simple as ‘Shall I book the cinema tickets for next week’ can be tricky. The true answer would be I can’t commit to going out because my health may take a nose dive. Of course if you are well, you’ve missed an opportunity to go to the cinema with friends, but on the other hand you haven’t wasted money or your friend’s time.

STRATEGY FIVE : We generally only book hotels, restaurants if they have refundable or zero cancellation fees for example. If I am not well then we can cancel without losing money.

STRATEGY SIX: I do more things alone or just with my husband – because there is less pressure to have to attend events when I am not well. I don’t like messing people around if I suddenly have to cancel – and not everyone understands.

Valuing friends

The majority of my friends have impairments – and most of them have progressive medical conditions. Some could die at any moment. It’s hard to suddenly see your friend’s name on Facebook with RIP next to it. Normally you wouldn’t be bothered if your healthy friends hadn’t been around social media for a while. But with my friends it often means only one thing … that heart stopping moment where you rush to their profile page, preparing for the worse.

I wonder whether the thing I just shared on social media might be the last – and what will that say to people who might visit my memorial page! What lasting impression will I give people … it’s kind of amusing. Read your last tweets/retweets and status updates and see if that is how you want to be remembered. It might make you think.

So maybe we value each other a bit more and the time we have – e-mails and chats are responded to quicker – tomorrow may never come.  We joke more about the future and about being old with our 20 year old friends. Birthdays become very poignant – a celebration of making it to that age and a harsh reminder of how little time might be ahead.

Live life quicker

STRATEGY SEVEN – pack as much into your life whilst you can.

It’s the classic – don’t put off doing something today because you think you can do it tomorrow.


You have to pack into life, the things you want to do or experience, in a much shorter time.  It might be something as simple as having a favourite meal or as big as a trip away to somewhere you’ve always wanted to go. Sometimes things are just not possible and you have to have a ‘next best thing’ strategy. I substitute the ‘go round the world’ adventure for a jaunt on google earth or the immersive experience of interacting with world travellers live on Periscope from the comfort of my own home.

Final thought

So, like Marty in the classic movie we mark today – living without a definite future can be tricky, sometimes we see our image fade before our very eyes. Missing from the albums of future weddings and special occasions. Sometimes it’s amusing and brings up unique conversations.   Most times it’s pretty darn good and not set in stone – but I AM disappointed we haven’t invented the hover chair yet ….. See you in the future ….

Good Riddance to the ILF


Well, here we are at the end of the ILF era. It’s a key date, destined to be part of UK disability history.

Reading the news, watching lobbying in Parliament and perusing  social network comments, you would think everyone using the fund wanted it back. Nowhere was there a balance of hearing from people like me. Long term fund users who were glad to see it end.

Disabled friends vilified me. How dare I be glad this is happening.  It would mean imprisonment, having no care and feeling you’d be better off dead.

I am going to celebrate a new beginning.

The good…

Actually, my needs had not changed and the local authority did the assessment. They agreed to fund me the part ILF covered. I had no drop in the amount and I’m financially better off as I won’t have to contribute towards my care. So, at least for now, things are good.

The bad…

The ILF had many problems for me. No longer do I have to do exhausting 3-4 hr reviews -being questioned by the ILF to enable funding for another year.

No more tears having to tell them over and over how impaired I am – repeating the same thing as Adult Services already knew. No more appeals and lengthy complaints procedures when they would cut my funding giving no explanation.

No more rules like “we give extra funding for out of pocket carer/PA expenses… but only if you ask” and “you are not allowed to use your ILF funded hours for doing window cleaning, gardening …. “.  They even stopped disabled parents using their funds for Personal Assistance to enable them to care for their children.

Since 1997 I’d been trying to get them to communicate by e-mail because it was the easiest method for me that meant I could read  information privately and easily and access it without physical assistance. That never happened. They continued phoning and  posting printed information. They never understood my needs.

No more arguments between Adult Services and the ILF about exactly who would fund which hour. Would Adult Services fund the first toilet visit on a Tuesday or the ILF? That is how petty it would be. The ILF kept a chart of each hour on each day to see which ones they would fund.  In the end this was nonsense because they both put the money in my account and I just got on with paying my assistants.

No more having to contribute 50% of my government benefit for care. I can now use that towards care and disability related expenses that fall outside of council funding.

The ILF was hardly run in the spirit of transparency and Independent Living.  In fact, it was so bad the Trust had to rewrite its constitution some years ago.

Using the fund was a necessary evil. It got me through university when Direct Payments didn’t exist.  It topped up my high care package that kept me living in my own home and employing PAs.  They reluctantly funded some hours to top up a third funding stream, Access to Work. What a hellish process of persuasion that was.

and the ugly?

I don’t disagree that the switch over to council funding has been badly organised in England.  People are having a very stressful time. I have too.

The local authority should have been made to ring fence the extra funding provided to them for ex ILF users.   The amount was only a one off and it seems wasn’t enough to fund people in those local authority areas, causing ‘your funding may decrease’ letters going out.   Also, councils left it until the last minute further adding to the stress. Finally, Social Care law changed in April so practitioners are still getting to grips with new procedures and guidelines which elongates the process.

Where I’m at today

My switch over was exhausting (made me I’ll for 4 days) but positive.  It was done in an understanding manner and I was informed what stage it was at along the way.  It was just a repeat of everything that should have been on file and some hoop jumping.

I am currently applying for Continuing Health Care and a Personal Health Budget.  It’s going badly. It’s a hundred times more stressful and exhausting than the ILF switch because of making me feel dehumanised.  I guess that story will become another blog post!

Update November 2015

I wrote an article for Disability and Society called ‘In celebration of the closure of the ILF‘. which was published in October.

It’s free to download.

I had the second part of my assessment to try and get a Personal Health Budget. As I wrote above, the first session went badly. The second one not so bad – but still exhausting and stressful. Basically they agreed to fund me and I switched over from Direct Payments within 6 weeks. I have extra funding for support to give hubs a break and some other things – so far it is going ok.

Will it be sunny in June

  

Without the right level of health or social care a life once filled with colour can turn into a miserable grey existence.

A spring flower that once bloomed brightly and stood tall can swiftly become a shrivelled, dull and lifeless plant. With not enough water and sunshine it is destined for the compost heap.

Yes readers, life would be that shitty if I lost my health and social care support that is my water and sunshine.

Yesterday the clouds came. Like many disabled people in the UK my Independent Living Fund is withdrawn in June. This money gets added to some from the council and I use it to employ my assistants. I’ve done this since 1993. It’s been known for over a year that the Fund was closing – yet the council leave it to the last minute to come up with a funding proposal.

Assessments are physically and mentally draining. They cause a lot of worry and need a lot of concentration. They make me ill.

I sat through a 2.5 hr assessment from Adult Social Services to gather information. A panel of people who don’t know me will then decide on whether to take over funding or cut my money. 

I meet the criteria for the NHS to fund my assistance. The information will also go to them. A NHS panel will also see a letter from one of my specialists and may send someone out to ask more questions. They have 28 days to make a decision. 

I’m told that they rarely fund anyone in Kent. Most of my friends with the same level / type of impairment are funded this way.

It’s left me exhausted. I worry that the complexity of my care won’t come across on paper.  What if I forgot something? I keep going over and over it in my mind. 

After the last care assessment (about 6 months ago) I explained my needs. The copy of what they wrote had three glaring errors.  Two of them were getting the name of my medical condition wrong and saying I used oxygen when in fact the machine is a ventilator breathing for me. Based on that alone leaves me with no faith in the system.

At least I get to see what they wrote to check accuracy before the panel see it.

So I will just have to wait and see what happens.

A rare find

When naturalists discover a new species, in remote corners of the world, they leap with excitement. Naming it, classifying it, protecting it, saving it for humankind. They share it with the world, write scientific papers on it, take photos and samples to understand it’s cell structure or physiology. How does it live, how did it evolve, what are the conditions it needs to thrive, how does it fit in with the ecosystem… so many questions bringing a flury of research to learn more.

This is what happens with the discovery or a rare animal and this is what happens when science discovers a unique human – like me.

We tend to get classified, photographed, probed and questioned to see what makes us tick – then people write papers on us and try to figure out how we work to share that information to help others or for scientific documentation. The race begins to find a way to fix what went wrong before we expire – funding permitted. Like a rare animal, sometimes our bodies, or parts of us end up in laboratories and museums …. I think part of my leg is still frozen in a test tube somewhere in Newcastle.
A unique person not a lab rat.

LGMD

I have unique DNA – a unique genetic default.  My mutations don’t do anything exciting like give me super strength – in fact it’s just the opposite, they take away my strength, more and more each day.

In the UK there are around 70,000 people effected by Muscular Dystrophy (MD) and similar muscle wasting conditions. I am one of them.

Out of the many types of MD in the world – I have Limb Girdle. The prevalence of these types of dystrophy can only be estimated – anywhere from  1 in 14,500 to 1 in 123,000 [van der Kooi et al 1996].

Specifically, the type I have is Limb Girdle 2C.  In the body there are 4 sarcoglycan genes – I was born with a mutation and I can’t make a protein called gamma sarcoglycan.    Around 1 person in 178,000 have a type of sarcoglycanopathy.

 

globe3

A world apart – brought together via the Net.

In some parts of the world more people have this mutation and in other places nobody knows how many people are affected.

Studies found that in New Delhi, India 11.8% of people with LGMD had sarcoglycanopathy. In Japan it was 8.8%, Netherlands 25% and 55% in Brazil. [SourceLink]

So – in some places it is easier to find someone with the same condition – for support and understanding – and now with the internet, people with rare conditions can easily find each other and create their own support groups and sources of information.  All the most useful information that helps out on a day to day basis has come from other people with the same or similar condition.

 

ducks_me

Living with a rare disease

Statistics like these makes me a rare individual and today, 28th February is Rare Disease Day 2015 – which is all about what it is like to live with a rare condition, and how it effects families and communities.

Sometimes things so rare don’t attract research funding, so it can feel there is no hope. LGMD2C certainly doesn’t attract the research funding like Duchenne MD does – chances are you’ve never heard of my type yet it is pretty much the same as Duchenne in how it affects me.

If you know me then you will have a glimpse at what life is like – at least the physical practicalities – and maybe that’s the best type of understanding – just knowing and interacting with me is possibly insightful?

Don’t just be aware – do something!

Being aware of the name of my condition, clicking ‘like’ on Facebook or similar won’t make treatment any more likely – the whole world could be ‘aware’ and it wouldn’t make the slightest difference.  The awareness day for Limb Girdle is actually my birthday, but I’m not taking part in it.  Coloured ribbons don’t generate action to help make life better.

Some campaigns focus around the ‘help dying children’ concept.  Well how about helping living adults like me – we need help too.  Don’t believe the ‘most people with LGMD2C die in their teens or 20’s’ slogans like this one.  Some do but many don’t.  I’m nearly 40, as are a lot of my friends – and we need support to live without treatment until cell research provides a therapy or ‘cure’.

 

Let’s face it, it’s actions we need …. either hard cash (and lots of it) going into specific research or in supporting people to live with the condition.  In the absence of cash, friendship and voluntary work can go a long way in making life good.  Friendships is free, a signature on a campaign for equality is free, speaking out with disabled people to improve quality of life is free,  caring about how the NHS secures funding for medications, treatments and services for people with a rare disease is free.

For information on Sarcoglycanopathies and research visit Muscular Dystrophy UK

To see what life is like living in the UK with LGMD2C – read my blog 🙂

 

——

 

van der Kooi AJ, Barth PG, Busch HF, de Haan R, Ginjaar HB, van Essen AJ, van Hooff LJ, Howeler CJ, Jennekens FG, Jongen P, Oosterhuis HJ, Padberg GW, Spaans F, Wintzen AR, Wokke JH, Bakker E, van Ommen GJ, Bolhuis PA, de Visser M. The clinical spectrum of limb girdle muscular dystrophy. A survey in The Netherlands. Brain. 1996;119:1471–80. [PubMed]

Disability, Torture and Human Rights

Today is Human Rights Day and this year’s slogan, Human Rights 365, “encompasses the idea that every day is Human Rights Day’.  These are principles of equality, fairness, dignity and respect which human beings aspire to – and which nations sign up to in the various Declarations.

I love Article One

  • All human beings are born free and equal in dignity and rights.

and Article Five ‘

  • No one shall be subjected to torture or to cruel, inhuman or degrading treatment or punishment.

However, according to this article some of the methods of torture include things that some disable people experience:

1. Denying access to the toilet so that people who had their movement restricted were forced to urinate and defecate over themselves was described as a degrading element of torture.

But it’s ok for an immobile person to lay unable to move in a urine soaked bed or chair because they don’t have access to care or equipment?

2. Being restrained in painful positions for long periods or being forced into ‘unnatural positions for extended periods’ is a method of torture.

Having to sit in a wheelchair, because of a severe impairment,  (or lay in a bed) that forces your back or limbs out at the wrong angle to cause nerve pain, pressure sores, dislocations etc is torture – yet people are in these positions for what could be years, with no pain relief, waiting for appropriate support/equipment/assessments. You may never experience a life without pain if you live in a country that doesn’t provide equipment. A pain where the only relief is death.

When your body is already twisted and contracted and placed in a position where you are not supported – the weight of your   body pulling against other body parts that refuse to stretch from their contracted state is like being on a rack. The agony is indescribable.

3. Sleep deprivation is defined as a method of torture.

Poor pain relief, pressure relief and postural support for disabled people can cause extreme sleep deprivation that brings on cognitive problems, hallucinations, memory loss, communication loss and many problems. Carers who might only get a few hours sleep experience sleep deprivation – night after night, month after month – yet this torture is ignored.

Where are our rights?

So spare a thought for the elderly neighbour, disabled friend, the person being the closed curtains who can’t leave their home …. because torture isn’t just the experience of terrorists or prisoners … it’s happening in our streets, in the UK, every day of the year and it’s not going to stop until it’s recognised.

Rights for everyone or a cure for the select few?

Today I considered this:

People might fund research but will they support my rights for a better life with as much passion?

When it comes to charity funding, I’ve lived too long with a progressive impairment (and experienced the effects of charity) not to be clear in my mind who will benefit from any money I donate or which charities I want to support. Donating money is a personal thing. I prefer to donate to specific charities, with an ethos that fits my views on disability equality for example or because of the way the money will be used.

Anyway, a certain bucket challenge these last few months, has seen a lot of money go to one particular charity.

Today I read this article by  Andrew Pulrang who blogs with reference to the MDA telethon & ALS ice bucket challenge.

He writes:

“I don’t really object to raising money for medical research into disabling conditions. I resent the fact that the general public is consistently more excited about supporting those efforts than they ever are about supporting equal rights, equal access, and the nuts-and-bolts stuff disabled people need to live decent lives with our disabilities.”

This is a hugely important point that gets lost in big fundraisers of any kind that focus on research.

This is what my blog is about today.

 


 

 

We know that 1 in 17 people will be affected by a rare disease at some point in their life – like ALS, Huntingtons, Cystic Fibrosis or Muscular Dystrophy (4 of over 6000 recognised rare diseases in the UK). I’m explaining this because I’m looking at research from the point of view of having a rare disease.

What if the one you, a friend or loved one gets isn’t the one attached to a well funded charity? The person still has to get on with their daily life – living in a society that doesn’t seem to care if you are treated equally or not or receive the best support, medical or social care? One which isn’t bothered if you have equal (or any) access to work, education, leisure, housing, equipment to enable you to move or speak? One that might leave you below the poverty line?

People might fund research but will they support your rights for a better life with as much passion?

As the ice bucket swept across the globe in various formats – I found people’s ideas quite disturbing, especially this one.

  • A show of love – the more you give the more it shows you care?

I  read that one person (family member of someone with ALS) said ‘this (ice bucket donation) would show them they are loved’.

I don’t like the idea of equating the amount of love you have for someone with how much you give to a charity that could find a cure for them.

So, because nobody in my family or friend group has done a major fundraiser for Limb Girdle Muscular Dystrophy type 2C – does that mean they don’t love me as much and want a cure or treatment for me? You can still love someone, and want the best medical treatment for them without proving it by running every marathon known to man – or is society pressuring you into thinking you must?

Reading people’s comments about the Ice Bucket Challenge also opened my eyes to the general ignorance of what people think research means or does.

moneyFundraisers for research – when a cure or treatment isn’t what you think.

People more readily support research for ‘cures’ or major treatments – because then people won’t have terrible progressive diseases. Life will be good for them, no pain, living longer, doing ‘normal’ things again, walking, talking, eating, breathing.

  • Not all about cures – research might be for therapies to ease symptoms or detect faulty genes or understand how conditions are passed on to children.

Some types of disease can’t be detected until a person has symptoms. Other types can be detected just after conception or during pregnancy, in some cases outside the womb. This gives people a choice to make. Many families have these options already – research has allowed us to detect who might have some of these rare diseases or pass the genes onto their children.  So research isn’t all about a cure and there are a lot of other things that need to be funded along side – like balanced information for those who might be affected, emotional support and counselling.

However, it may be possible that, in the future, an infant is cured before they know they had anything wrong in the first place – this is the sort of thing people seem to think research is – full removal of the condition with no ill effects rather than just ‘gaining a genetic understanding’.

  • Back to research – is it what it’s cracked up to be?

The public generally know very little about how research works even though they pile money into it.  So many times I read comments suggesting people with ALS would now be cured because of the amount of money going into research.  I wish they had taken the time to find out how research into rare diseases works (and how treatments are given or not given if available).

  • Not a quick fix

Do people understand how many millions research costs, over many decades of trials before a therapy is available for all.  You don’t inject millions into research and expect a cure within the year!

  • Does a cure mean for the whole body or a part of?

Even if a therapy is found to ‘make right what went wrong’ – it might not be a whole body treatment, and may only work in young people or children where the disease hasn’t progressed enough.

A cure or treatment, could give people back a level of mobility, for example, – but they might still need a wheelchair  or specialist support.  Maybe they would gain the use of even just one finger – it would be a big thing for the person and worth the research effort … or would it?

  • Old and past it

Even if a cure came up for my muscles, most of them have turned to fat and just aren’t there – so adding the missing gene to give me the use back, isn’t going to help me without a full muscle transplant as well!  I.e. there will still be a whole group of ‘incurable’ people for whom research will be of little if any assistance in it’s current form – *feel free to donate to cybernetic implants – might be a better investment of your charitable donation for some people!

  • Who gets the treatment?

Also, a treatment may exist but is won’t be available on the NHS or only given to a select few people because treatments and therapies are so expensive or ‘unproven’. We have seen how treatment options affected Ahsya King and his family this week.

  • Human guinea pig

Sometimes people like myself get asked if we want to participate in research.  I have on a few occasions and I had to fund getting to and from the hospital and was never told how the results would be used – I donated my living body to funded research and didn’t hear anything about how I was going to be used (we are talking about pictures of my naked torso showing scolisosis progression and bone density scans – plus the humiliation of being photographed from every angle in hospital photography studio). I felt rather violated – maybe they ran out of money when it came to patient consent and understanding what on earth was going on! Would you be so keen to donate if you knew it could be like this? Is this the sort of research you imagined?

Before you give to research charities

Please, before you donate to charity, do some homework, at least visit the charity website and find out what sort of things you might be funding and how involved patients actually are. Read between the lines, ask questions and make sure it’s something you really want to support.

 

Be passionate for our rights and inclusion – speak out with us so we can improve our lives.

rightsWhat would be beneficial to the millions of people with severe impairments, would be if people could also stand up for us when we are struggling to access basic things in life.  Abuse and harassment (sometimes random acts of violence to visibly disabled people) is keeping people locked up in their homes out of fear, many have even taken their own lives because of hatred, bullying or threat of poverty. These things are just as important to address, but few seem to care.

Did you know that disabled children and adults are being changed on dirty toilet floors in public toilets and even hospitals – because there are no hoists or changing benches available? Basic hygiene and sanitation is being denied – in the UK!  Just one example of how improvements are needed for equality that we simply haven’t addressed. Where do you start when we haven’t even got equal access to a toilet.

People aren’t so willing to stand up for our rights to health care, social care, leisure opportunities, housing, equipment, work etc and even life itself. These things are ignored.

Cures might come one day for some people with specific conditions – but there will be millions globally who will remain severely disabled and excluded because nobody invested in making the day to day things right.

Inclusion benefits everyone – and will always be needed unless you believe in a future where there are no disabled people or those who are sick or frail from simply living longer.

 

 

 

Reducing the cost of ‘disability’ – hands free drink invention.

It’s costly being a disabled person. Scope are running a campaign at the moment highlighting the costs people incur. Visit Scope UK: Extra Costs.

Here is how I saved myself a lot of money this week.

There are many types of costs but I’m looking at products and every day living items in this blog.

Day to day items that you need are often quite expensive and specialised – i.e. they are manufactured as ‘disability’ items.

This blog is about one such item – a system to enable someone to independently drink if they can’t move their arms or legs.

Here is an example of how disabled people like me (and their families) have to be usually quite creative in ‘doing it on the cheap’. It also shows you the mark up of items sold as ‘disability’ products that might be sold elsewhere for the general public.

So how do you reduce the costs of items that you need?

  • Be inventive
  • Make things yourself – up-cycle.
  • Make use of E-bay to source items or parts
  • Be prepared to spend many hours of research
  • Be creative
  • Know someone who’s good at making stuff or putting things together!

drinkup-travel-lite-560-p[ekm]282x300[ekm]

Cost of product: Drinkup Travel Lite – £98.00 GBP ex VAT

Items – Clamp for wheelchair, flexible arm, bottle holder, CamelBak Bottle (choice of 2 colours) and bottle adapter (long straw). Also some adaptors, allen keys and clips plus instructions.

My kit – £33.19

Drink_bottleclampI sourced my own items from Amazon one afternoon. Free delivery.

xhorizon – Goosneck Clamp Flexible Kit

  • 1 Flexible arm (this holds the straw near my mouth).
  • £13.95
  • I had a choice of colour – so a bonus find.

CamelBak Bottle – my choice of size and an array of colours

  • Eddy Tritan (which features a loop to tie onto my chair)
  • £11.94

CamelBak Trinkadapter (the long straw part).

  • £7.30

 

Total cost of the same items (bar a few ‘ties’ to hold the bottle to my chair) = £33.19

Benefits

  • Saved £64.81
  • Wide choice of colours of all parts
  • Will benefit my husband having to hold a cup/straw to my lips every time I want a drink in the evening.
  • Works well (even when you can’t easily suck or bite to activate the straw)
  • Easy to clean and parts are affordable to replace.
  • Healthier living.

 

 

 

No Sh*t Sherlock – Researching the obvious.

Four months ago I participated in the following research…

“A questionnaire study examining how psychological factors impact on quality of life and mood in people with muscle conditions”

Firstly, it’s about time that people stopped focusing on the physical part of living with dystrophy and looked at the emotional impact. Mental well being is terribly overlooked. I thought to myself, this was finally being taken seriously.

However, a number of participants have been less than impressed by this research and fear it may turn into a report that merely states the obvious.

Your_mood_and_life_satisfaction

 

Here was one particular ridiculous question.

1) Let me think – is my life ideal? Yes is probably as good as it can be given the extent that MD affects me. However, is my life ideal? No, because it would be far better without MD!

2) Same as the above – define ‘excellent’ life conditions. If I wake up alive I consider it a good day and a most excellent start. Generally though, having MD does not make any day ‘excellent’ – I wouldn’t recommend it.

3) Am I satisfied with life? Ehm, in what sense? What does it mean to be satisfied? I’m warm, happy, content, not in continuous pain, loved, live in a nice place, fed and watered and in communication with the world around me – that’s pretty good?

4) I wouldn’t change anything about life if I could do it again?

This is a huge philosophical question. Would the said replaying of life still mean I had MD – or can I change my life starting from when I inherited MD at the point of conception? If I had to live it again with MD – would my life still be in the same country, to the same family, with the same education, forming the same friendships etc?

I can think of people I’d rather not have known, who have been a bad influence – but without future vision, I wouldn’t know it at the time and might still be acquainted with them – or do I get to delete them from my second life?

If I knew the NHS was going to be crap …. I could have started saving earlier for private treatment or equipment. I would have started applying for a wheelchair and profiling bed 3 years before I needed one so it arrived on time.

Are we talking more about a parallel universe with infinite combinations of my life?

Surely we could all think of some things to change if we started again and see if it was any better (not that you’d know unless your remembered life number 1)? A lot of how good life is depends on luck, chance, random influences – or maybe even faith in a path already planned to some extent? Ground Hog Day is proof of what can happen with just one day slightly tweaked!  Opportunities might be worse the second time around? Life is full of ‘should have, could have’ …. change one thing and everything after it could be altered for better or worse.

The fact is, I have the life I have. There is no option to live it again … so why bother even thinking about it! In fact, thinking about it only wastes the time I do have.

So, I’m probably thinking too deeply about this – but that’s just me. I couldn’t pick an answer.

I came to the conclusion that I would change ‘having MD’ to ‘not having MD’ for my second attempt at life – if only to avoid filling out stupid questionnaires like this one!