More on the standing up wheelchair

Those of you who have been following my blog - poor you, you need to get out more - may recall that I have previously written about trips to the National Hospital for Neurology and Neurosurgery (NHNN), in Queens Square, London, and the efforts of the Physiotherapy team to get me standing in a standing frame.

 

On the 10th July, I wrote a piece regarding a standing up wheelchair, called a Levo C3, which had been demonstrated to me at my home, and about trying this out.

 

I was very encouraged by what I saw, and impressed with how easy I had been able to get from sitting to standing by using the stand up feature of the chair.  However the cost of this wheelchair, once the company had done the full calculations was coming in at over £14,000, spread over 5 years.  This was even using my Mutability allowance.

 

I have done some searching round on the internet, and have found some cheaper alternatives, but nothing that looks quite as good as the Levo C3.  There is a stand up wheelchair called the Genie, which starts of at approximately £6,500, but despite calling the company and emailing them, I've never received any sort of response, which doesn't bode well with me if there was then a problem with the actual chair.

 

I have also spent some time reviewing comments made by users of these stand up wheelchairs on some of the online forums, and have found they have got a very mixed reaction. 

 

There are some good comments about how the chair stands you up and the benefits this gives to the user, but reliability and service are clearly an issue.

 

One person had bought a Levo C3, but had needed to return it to the factory, in Switzerland on 9 occasions in the first 12 months of having it.  Although a replacement chair was provided, each time he returned the chair, he was without his own for between 5 to 14 days.

 

There was another review where a man had been sitting in his chair and it had started to move him into the standing position, without him setting to controls to do this.  Fortunately he had the leg braces and chest strap in place, otherwise he would have been tipped onto the floor.

 

Similar comments about reliability were posted about other chairs, and with some negative comments were made regarding the service provided to repair faults.

 

If I'm going to pay this sort of money, I don't want the chair breaking down on a regular basis, and I certainly don't want unreliable service.

 

Having looked at these comments, I called up my local wheelchair services.  These people are run and funded by the local NHS Trust, and provide both my manual and powered wheelchair.  They do not however supply stand up wheelchairs.  However I thought it was worth talking to them about these chairs.

 

Yesterday a guy from wheelchair services came out, with a representative from Sussex Care, who supply the wheelchairs to Croydon NHS.

 

I explained why I was asking about these chairs, and about the Physiotherapy I had been having at NHNN, and the need to get some sort equipment in place at home so that I can continue standing on my own, on a more regular basis.  I then went on to explain that I had seen and used the Levo C3.

 

The representative from Sussex Care, said that they could provide a stand up wheelchair, but that this would not be funded through Croydon wheelchair services.  However, he went to then say some pretty negative comments regarding them.

 

He looked at me in my current chair, and saw that I use it without the footplates, which allows me to be able to move my feet and legs freely.  In a stand up wheelchair, you always need to use the footplates, which then limits this freedom of movement.  Also, in the stand up chair, there are leg braces that hold your legs in place as you stand, and prevent these from collapsing.  These leg braces cannot be put in place by the user sitting in the chair, and therefore if you intend to use it on your own, you would need to sit with these in place full time.  This would completely restrict movement in the legs. 

 

Similarly the chest strap would need to be put in place and fixed by another person.

 

He also said that the stand up wheelchairs are only really suitable for use indoors.  Although they are advertised as being indoor/outdoor chairs, they have so many moving parts, that using them outdoors and the resulting vibrations through the chair, can often cause these moving parts to become loose and stop working.  He said to those people he supplies them to, they normally have the stand up wheelchair to use indoors and another power chair to use outdoors.

 

He suggested that although on demonstration they appear like a great solution to standing, in fact they are only really good for this, when they are working properly, and that you need another chair for day-to-day use.

 

Frankly, if I'm spending this amount of money, then I don't want it as a second chair, and haven't really got the room to accommodate two chairs.

 

I then discussed with him about what I had read about the reliability and servicing issues, and he agreed that you could expect problems on a regular basis with them breaking down, due to the high number of moving parts, but he assured me that servicing with his company would not be a problem.

 

He did say that bearing everything he had said in mind, he would be happy to demonstrate chairs to me.

 

I thanked him for his honesty and we left it at that.

 

I go back to NHNN next week, and will discuss with them different ways of using a standing frame, to see if I would be able to use this more independently, and therefore make this a better option to have at home.  Certainly standing frames start at about £2,000 so from a financial point of view they already look better.  But this isn't really about the cost, its more to do with getting the right piece of equipment, that I can use and get the physical and psychological benefits from.

 

Following the initial demonstration of the Levo C3, I was very upbeat about a stand up wheelchair, but the more I've looked into it, the more I've started to have doubts.  I'll see what happens when I go to NHNN next week, but know that there is a solution to this out there, its just a case of finding it.

Made in Britain - Part 2

Following on from yesterdays blog, I now attach a picture of me in my sporting prime - whenever that was.

 

This picture would have been taken about 1990, and I am standing second in from the left hand side.  The team was Oxted Rugby Club, and this is the second team photo.

 

 

 



Those observant among you will have noticed that there are only 14 of us, whereas a Rugby Union side will normally have 15.  It wasn't unusual for us to turn up a man short, or for someone to join in half way through the game, having arrived late.

 

These were good times, with many a Saturday afternoon - and the occasional Sunday morning - spent plodding round a pitch all in the name of sport.

 

Sport isn't all about the physical effort, but also has a huge social impact as well.  By and large, the guys at the club were good friends, and we could share a drink and a laugh after a game.

 

My doctors were always surprised that I could compete at such a tough, physical game, and were constantly warning me of the risks I was putting myself at of a serious injury, or possible broken bone.  I enjoyed it too much to really listen.

 

Eventually, I gave up, not really because of injury or that it was becoming too much effort, but really due to the demands of my career, and the time I was spending at work.

 

I often say that giving up Rugby was a bad decision, as I never replaced that hard physical workout.  I used to play golf, but that's hardly the same.

 

I don't know if the two things are related, but shortly after stopping playing Rugby, I began to find that the weakness was creeping back, and things were starting to become an effort again.  It might be a coincidence, but I do feel that if I had continued playing for another couple of years, then maybe I could have had more time before getting in the wheelchair. 

 

As I have said before a lot of my best memories are connected with sport, and particularly with supporting my football team, Crystal Palace.  They are my local club, and the first team I ever went to see live, at about the age of 12 or 13.  I was hooked after just one game.  Not by the skill and dazzling play, but by the atmosphere at a full football stadium.  Although you can no longer enjoy a game standing on the terraces at most grounds, there is still something about the atmosphere at a game of football that is hard to beat.

 

Sadly now being in a wheelchair, it is difficult to get to games, and even more difficult to find grounds that adequately cater for disabled supporters.  At most grounds, wheelchair users are pushed out of the way, with a poor view of the game.  Most grounds don't even cater for away fans who are disabled.  And the facilities at most grounds for toilets - which for able-bodied people are fairly primitive - are non-existent for the disabled.

 

And this is the same for most sports venues.

 

I watch lots of sport on TV now, and get great enjoyment from that, but just occasionally I'd like to be able to go to a game.



Made in Britain

"In this country we will never think of sport the same way and we will never think of disability the same way. So yes, the Paralympians have lifted the cloud of limitation.

Finally, there are some famous words you can find stamped on the bottom of a product. Words, that when you read them, you know mean high quality, mean skill, mean creativity.

We have stamped those words on the Olympic and Paralympic Games of London 2012.

London 2012. Made in Britain."

 

The words above are the closing lines of the speech given by Lord Sebastian Coe, at the closing ceremony of the London Paralympic Games 2012.

 

It was a year ago today on 27th July 2012 that the opening ceremony for the London 2012 Olympic Games took place and ushered in a fantastic summer of sport.

 

From the start of Danny Boyle's opening celebration, it was clear we were in for something special, and we certainly weren't going to be disappointed. 

 

Almost 3 weeks, and 19 bronze, 17 silver and 29 gold medals, later we knew we had just witnessed the greatest Olympic Games ever.  Not just in the sporting endeavour, but also in the way it brought people together - united in their passion for sport.

 

And if that wasn't enough, on the 29th August 2012, the London Paralympic Games began.  We spent 2 weeks watching amazing feats of sporting courage, and were rewarded with a GB haul of 43 bronze, 43 sliver and 34 gold medals,

 

From everyone involved it was an incredible few weeks.  The venues were spectacular, the athletes showed the best of sporting endeavour, and the public loved every bit of it and flocked to the venues to get their daily fill.  The TV coverage was fantastic, across a whole range of sports.

 

But the best thing, were the Games Makers, who volunteered to help out to ensure that the Games ran smoothly and that the millions of spectators and tourists were able to get the very best experience from being at the games.

 

For a dedicated sports nut, like myself, it was heaven on earth.  Wall-to-wall TV coverage from early morning to late at night - I don't think I got out of my armchair the whole time.  My only regret was that I didn't get to actually go to experience the atmosphere, first hand in the Olympic Stadium.

 

Last night, saw the start of the Anniversary Games, where for 3 days champions from last year, both Olympic and Paralympic, will return to the Olympic Stadium to compete again.  Its billed as if its a second coming for the Olympics.  But sadly its a shadow of last years glory.  Realistically it was always going to be.  After all, how do you re-create the greatest sporting contest over a weekend.

 

But it is a reminder of what a great few weeks we enjoyed last year.

 

The Olympics have inspired more people into sport and to actively participate.  As a nation it brought us closer together, and gave us all that "feel good" factor we needed, in the middle of the economic gloom that was gripping the country.

 

In Lord Coe's speech he said, "In this country we will never think of sport the same way and we will never think of disability the same way. So yes, the Paralympians have lifted the cloud of limitation."

 

In terms of disabled athletes, the Games, have certainly raised their profile.  We are far more aware of the likes of Dave Weir, Hannah Cockcroft, Richard Whitehead and the like, and the very personal battles they have had to overcome disability, to be able to compete at the highest level, in sport.  Words like courage and bravery are often used to describe sporting effort, but in the Paralympic sports stars, these words really are a true reflection of what they have to do, to overcome the limitations of their bodies, in order to become elite athletes.

 

Facilities for getting around London, have certainly improved as a result of the Games.  Public transport is more accessible, although there is still some way to go.  Access to buildings is far better.

 

However, sadly for the average disabled person, I suspect very little has really changed.  Within a week of the Paralympic's ending, I was verbally abused by a young woman, when I asked her to move her car in front of a dropped kerb, when I needed to cross the road.  And it is still easier for some people to ignore me in my wheelchair, rather than offer to help or even just say "hello".

 

Some of this problem, has been caused by the Government, and taken up by the media, who have tried to portray disabled peopled as somehow sponging off the state.  The way cuts and changes to the welfare and benefits system have been justified, gives the impression that disabled people get too much help, and could do more from themselves.  The Government tries to justify changes by saying help will be more targeted to where it is needed, but in fact its all about saving money.

 

For the average disabled guy in the street, what should have been an opportunity coming out of the Paralympics to change attitudes towards disability and disabled people, has changed nothing.

 

As I have said before, I am a huge sports fan.  Some of my best memories growing up are connected to sport.  Playing football or cricket in the evenings after school, and at weekends in the local village field was all part of growing up.

 

I remember in 1980 going to scout camp, something I enjoyed every year, except that this year it fell right in the middle of the Moscow Olympic Games.  Not only would I miss a whole week of it, but worst of all I'd miss the clash of Coe and Ovett in the 800 metres. 

 

These two titans of British middle distance running were scheduled to race in the 800 and 1500 metres, with Coe favourite for the shorter distance, and Ovett favourite over the longer event.

 

I remember getting the news paper on the day after the 800 final, and being shocked to see Ovett had won.  The question was then, could he complete a double over his rival, and how could Coe comeback from such a crushing defeat.

 

Of course, Coe came back and won gold in the 1500 metres, with Ovett picking up bronze. 

 

But these events stay with me, and I can recall all the detail.

 

I was never a great sportsman.  I tried hard but sadly was never really good enough.  I represented my school at Rugby twice - both times on a losing side, where I was stuck out on the wing and didn't see the ball - and once at Cricket - on a winning side where I caught 2 slip catches, dropped 1, ran out a batsman from the boundary, and scored 4 runs - a fine clip off my pads - before being run out by my batting partner, who shouted "Run" and then stayed where he was, leaving me stranded.

 

I am very competitive and HATE to lose, but am better suited to team sports.  When I became ill at 17, my real concern was whether I'd ever be able to play sport again.  After a few years of hard work I started to play Rugby again.  It was real hard work, and my doctors certainly didn't approve, but I thought it was good for me and more important, I enjoyed playing.

 



Obviously I can't play sport now, but I still love watching it.  I can be found sitting in my armchair, kicking every ball, tackling every player and running faster than anyone else, most weekends.

It Ain't Half Hot Mum!

Not just the name of a sit-com shown on the BBC between 1974 and 1981, but a good way to describe the weather we are having here in the UK at the moment.

 

Yesterday was the 19th consecutive day that somewhere in the UK had recorded a temperature in excess of 29 degrees Celsius, which is very unusual.  On Monday the temperature reached 33.4 degrees Celsius, the highest temperature this year and the highest recorded for 7 years in the UK.

 

I realise that some of you will be laughing that we think that this is hot, but, being a weather obsessed nation, we simply aren't used to it being this hot, for so long.

 

Personally, I hate this very hot weather.  I can't go out in the sun without burning and it making me feel ill.  The heat, simply exhausts me.  Everything I do normally, just seems that much harder to do and it makes breathing very hard, as if the air was some how heavier and more difficult to breath in and out.  On Monday, I was talking on the phone to a friend, and had to say I'd call them back later in the week, as I was finding it so difficult to just talk to them, with the difficult breathing.

 

At night, using my BiPap machine helps me to breath easier, but it is still very hot, and this doesn't help me sleep, especially as once I'm in bed I can't move, and so am stuck lying on my back all night.

 

Fortunately, for the last week or so, Margaret, my carer, has been taking the mornings off, as this hot weather has been exhausting her, and a new girl, Augusta, has been coming at about 6.00 am to get me up.  I love getting up this early, especially now, as it means I'm not stuck in bed so long, and its cooler to get up, showered and dressed, so less exhausting.  It also gives me two extra hours in the day.

 

It always amuses me that Margaret comes from Nigeria, and some of the other girls who occasionally come, are from Africa or Jamaica, but they always complain that its too hot here.

 

Monday, morning I should have had my physio come, but she phoned to say one of her son's was sick and so she needed to stay home with him.  In all honesty, it was a relief as its too hot to have her pulling me about in this heat.

 

Tuesday, I should have gone to the Douglas Brunton Centre, where I volunteer one morning a week teaching the old people how to use computers, but the thought of sitting in a room with all the processing boxes, servers and the mainframe box blowing out warm air, just isn't appealing, so I cancel this as well.

 

Wednesday morning starts at 6.00 am, as Augusta comes and gets me up and ready for the day.  I have just finished my breakfast, and the transport ambulance arrives to take me for my regular 6 weekly appointment at the Royal Free Hospital in Hampstead, North London.  Dave, the driver, gets me strapped in and we are on our way by 6.45 am.

 

Its an uneventful trip from home, bypassing Croydon, and then up through Streatham, Brixton, and across the river on Waterloo Bridge.  We make use of the Strand Under Pass, and then up through Camden and Belsize Park, and arrive at the front of the hospital at about 8.15 am.  A good journey, with very little traffic hold ups.

 

Once unloaded, I find a working disabled toilet - why is it always the disabled toilets that are out of order? - before making my way to the ward.

 

Today was to be a day of meeting old friends.  The nurse looking after me, Ruth, has looked after me, on and off, for about the last 10 years.  Last time I saw her she had just returned from maternity leave having had her first child.  I was shocked to find that her little boy is now 3 years old.  We had a nice chat as she got me booked in and checked my blood pressure, pulse, oxygen stats and temperature - which were all OK.

 

I then went off to get my cannula put in.  There was already two people ahead of me in the queue, but I didn't have to wait very long, before I was called in.  The phlebotomist this morning was a girl called, Jacqui.  She has been sticking needles in me for years, but has a strange habit of calling me Anthony.  Even stranger is the fact that I now expect her to call me Anthony and probably wouldn't respond if she called me Dave. 

 

We always have a good laugh and it is nice to see her again.  She prides herself in always being able to get a needle in my very awkward veins first time.  She identifies a vein, she thinks will be easy, which makes me laugh, and as soon as she puts the needle in, the vein collapses.  It doesn't even bleed when she takes the needle out.  I accuse her of having lost her touch, but she blames me for laughing when she said she had found a good vein.

 

Second time lucky, she finds a vein in my hand and gets the needle in.

 

I go back to the ward, and whilst I'm waiting for Ruth to prepare me drugs, I call my respiratory physio, Christine, to let her know I am at the hospital.  I have a good arrangement with Christine, where I email before I am going in to hospital, and she makes a note in her diary, and when I get there I call her to let her know I have arrived and she comes to see me as quickly as she can.  If she is busy, it isn't usually urgent that I see her, so we then arrange to see each other the next time I'm in.

 

Ruth, brings the drugs and gets me hooked up, and then very kindly offers to go and make me a cup of tea.  This is one of the advantages of knowing the nurses so well.  Although they are very busy, they will do little things like make me a cup of tea and have a little chat.

 

I am having a 250mg bag of Methylprednisolone, which I have every 6 weeks, and in conjunction with my normal daily and weekly drugs, is part of the regime that is currently keeping me stable. 

 

I start reading my book, as I wait for Christine.  I'm currently reading "Boys Life" by Robert R McCammon.  I wasn't sure, when I first started reading it, whether I was going to enjoy it, but the more I read the better it seems to be getting.  Its about a small boy growing up in a small town, Zephyr, in America, and the events that effect him and his family, especially his father, and how they change his view of life and the town, over the course of a year.

 

Christine arrives and we have a good chat about how things are going.  As we chat she checks my blood oxygen levels, and is glad to see that these are good, in fact better that hers. 

 

My mask for the BiPap machine has been rubbing my nose a bit in the hot weather and Christine advises that she has another mask in mind for me.  She often tries various masks on me, as I don't mind trying different things.  I also have a very small nose - or cute as I like to call it - which sometimes makes it difficult to find the right mask to fit. 

 

The current mask I have, has little "pillows" which fit up each nostril, so the air is blown directly into each nostril.  I find it very effective and easy to fit to my face, but this problem with rubbing and making my nostrils sore has only arisen during the hot weather.  The part which has the "pillows" on is extra small in size and is usually used on babies, so that gives you some idea of the size of my "cute" nose.

 

Christine advises that they may have stopped making my existing mask but she will order a different one which she wants me to test, and post it to me.

 

We talk a bit about the difficulties with the hot weather and how this is impacting on my breathing.  She suggesting using the BiPap machine during a day for an hour, if I need to, as this might help.  Also she suggested that a small fan blowing air directly onto my face might help the air flow and make breathing easier.

 

We arrange that I need to have Lung Function Tests and to have my blood gases checked, and I will email her with my next appointment date, and she will try to arrange these next time I'm in.

 

All that done, Christine leaves just as my drip finishes.  Ruth, comes and puts a bag of saline on to make sure that all the drugs are flushed through the line, and into my arm.  That has only taken an hour for the drugs and 10 minutes for the saline flush, and once that is all finished and the cannula taken out, I go to the toilet to do the MRSA screening swabs which are routinely done every time I go in.

 

There is no sign of my consultant on the ward, and as I have nothing to discuss with him, I decide to leave early.   As I'm making my appointment for my next treatment, in walks my consultant, and we have a brief chat.  He seems very happy with my progress.

 

I then make my way down to the transport lounge and wait for a driver to be allocated to take me home.  Whilst I am there a porter brings in a patient in a wheelchair.  I don't know his name but he has often pushed me round the hospital, in beds or chairs, in the past, and he always stops and has a chat if he sees me.  We have a quick catch up before he has to rush off to push another patient round the hospital.

 

I often wonder if the fact that so many people stop and talk to me is a sign of how friendly everyone is, or of the fact that I go to the hospital too often.

 

After about an hours wait, Dave, comes in and says he'll be taking me home but has two other patients to drop off on the way.  We get loaded up and are on our way about 12.15 pm.  I ring Mum to warn her I'm on my way.

 

The first guy is dropped off a couple of miles down the road from the hospital, but the other lady is going most of the way with me as she lives in South Croydon.  She is very chatty, which is nice and this makes the journey pass quickly.

 

After dropping her off, we make for home.  Going up the hill about a mile from home, I can see a woman walking down the pavement talking on her mobile phone.  About 10 feet in front of her is a small boy, probably no older that 3, on a scooter, racing along the pavement.  As he reached the drop kerb, he suddenly veered into the road, in front of the ambulance.  We weren't going very fast - its a 30 mph speed limit, and we were easily inside this - but we were so close to him, I couldn't see how we would avoid hitting him.  To be honest I just shut my eyes, as I didn't want to see the impact.  Some how the Dave, avoided him, but if there had been traffic coming the other way, he would have had to make a choice of hitting the oncoming traffic or hitting the boy.

 

Amazingly, the woman didn't shout out at the boy, but shouted at the driver, to be more careful!

 

Anyway, Dave got me home, unstrapped and out of the ambulance, and after thanking him, I was indoors about 2.20 pm.  After a quick sandwich and a drink, I moved into my armchair and promptly fell asleep for the nest couple of hours.  I was exhausted.

 

So that was my day.  Hopefully, it will be a bit cooler for a couple of day, and I can recover some energy.

The Myositis Support Group - A Further Update

Many of the members of the Myositis Support Group (MSG) will today be making their way to Oxford for the charities Conference, Gala Dinner to celebrate 25 years since MSG was founded, and, of course, the AGM.

Because of the difficulties of travelling the distance required to get to Oxford, it isn't practical for me to go.  Also with the current heat wave we are experiencing here in the UK, it wouldn't be good for my health.

Since my last blog, things haven't moved very far.

Not having received any response from Irene Oakley, Group Coordinator, to my email written on Tuesday, I sent a further email on Wednesday, asking for contact details for the trustees, in order that I could address my concerns directly with them.

On Thursday morning, I found an email from Les Oakley, Chairman of the Board of Trustees.  In this email he had tried to answer selected questions that I had raised, but he had failed to address any of the issues I had raised regarding the AGM. 

His answers, I would say, were short, inadequate and, in there tone, defensive and dismissive.  Basically you could sum these up by saying he tried to justify what the MSG had done or were doing, but did not consider that there maybe any issues that needed addressing.

At the end of his email, he finished with this statement:

"In conclusion It is very easy to condemn an organisation for what may appear its failures but I would ask you to consider what has been done for Myositis. A few dissatisfied people can moan about our effort but the fact still remains and no amount or argument and debate can alter it, that Myositis, its treatment, management and research has been greatly advanced as the result of this charity and its members efforts."

This statement points to the past successes of MSG but fails to acknowledge that things might need to change to possibly improve how things are done.  By referring to "a few dissatisfied people", he appears to be dismissing any one who raises questions or concerns.

Worst of all, in his email, Les, has intimated that I am a bully.

Having received this early on Thursday, I acknowledged receipt and advised that as I was out in the morning I would respond later in the day.

I had an uneventful trip to the dentists in the morning, and after getting home and having lunch, I began to think about a response to Les.

I pointed out that he had only answered selected questions, and that I felt his answers were defensive and did not accept that there may issues that needed to be addresses.  I again asked for sight of the constitution as this had not been answered in his reply.

I have advised that I will waiting to hear what comes from the AGM, and will then address the issues I have raised again.

I made a few points about my membership and the fact that I appeared to have been "lost" from the list of members, but pointed out that I had completed a new form, online, and that I would consider myself a full UK member unless told otherwise.

I suggested that his "few dissatisfied people", was in fact a growing number of MSG members who were unhappy about the group and its lack of support.  If he looked at the community boards, he would be well aware of this.

I then went on to acknowledge the fact that MSG had achieved a lot over the past 25 years, and that far from wanting to condemn the organisation, I wanted to see it grow and develop into the first class support group for all its members, and for all sufferers of Myositis.  I also gave a little background as to my journey with Myositis, to show that I have a personal interest in the success of MSG.

At the end of the email, I asked for an apology for implying that I am a bully.

Later in the day, I received a response from Les, to say that he will endeavour to answer my questions after the AGM.  Sadly there was no apology.

In all honestly, I'm not entirely convinced about what I may have achieved this week, if anything.  I think Les probably thinks he has a trouble maker on his hands, and probably thinks that he can dismiss me in the same way that he appears to have done others in the past.  However, he has not considered that there may be problems with MSG, that need to be resolved, for the benefit of the organisation.  He also doesn't appear to consider that there might be a growing number of members who think that things need to change.

On the plus side, I have received messages of support, and a good group of people have come together, who are interested in helping support a move towards changes for the better at MSG.

I am not looking for change, for change sake.  I strongly feel there are problems and issues with MSG, and with the way it is run, that if resolved will only benefit the organisation and the members, and provide a much more active support group.

So finally, I'd just like to say to all of you going to Oxford this weekend, travel safely, and that I hope you enjoy the Conference and Gala Dinner.  I hope that the AGM, provides some answers, and starts to move MSG forward in a positive direction - but I doubt if it will.

Enjoy the weekend.

The Myositis Support Group - An Update

Since my blog last week regarding the Myositis Support Group (MSG), I have been amazed by the number of people who have looked at my blog.  The page views counter is now at 2,640, which is an increase of over 250 from where it stood before my last blog.

 

The purpose of my last blog on this subject, was to express my views on the forthcoming AGM, and to hopefully spark a debate about the Charity and its future direction, amongst the members.  And boy has it done that. 

 

I have had a large number of people contacting me, both on Facebook and directly, agreeing that things need to change, to improve the support and help that this group provides.

 

Spurred on by this show of support by these members, on Monday morning I put together an email to Irene Oakley, Group Coordinator, and sent to the Myositis office email address, which outlined several points which I felt needed to be raised before the AGM.

 

In this email, I stated that I was unable to attend the AGM, and in effect felt I was excluded from participating because I had received nothing to tell me what was happening at the AGM.  I pointed out that I had seen the "flyer" relating to the AGM and the fact there were two very important issues, which I felt should have been raised with the full membership before hand, in order to get everyone's opinions and ideas.  I also raised questions about how these two issues, the proposed change of name and the resignation of two of the trustees, where going to be handled, and if a vote was to take place how the votes of members unable to attend were going to be taken into account.

 

How an organisation runs it's business should be set out in a formal document, in the case of MSG a constitution adopted in April 1988.  This document is not available on the MSG website and without this members are unable to know if the business of the charity is being properly conducted.  I asked to have sight of this document.

 

Also, I queried why no Financial Accounts were circulated to members before the AGM, in order that proper scrutiny of the financial position of the charity could be undertaken at the AGM.  On the MSG website the last Financial Report posted was for the year 2007/08.

 

I also referred to my previous exchange of emails, in relation to the decline of the MSG website and the fact that as a result of this members have stopped using it.  I had previously been advised that the new website should be ready for the AGM, and asked if this was still the case. Also had the website been tested, and if so by whom and what feedback had been received.

 

I also covered the lack of any response to some of the negative comments by members on the community boards, to the decline in the MSG website and the support that the charity provides.

 

Finally, I raised the question of the lack of support some members had received by not being able to have phone calls answered, or emails replied to.

 

I finished off by asking that the email, in its entirety, be passed to all trustees, that the contents be discussed at the AGM, and a full response by return as these issues could not be left until after the AGM.

 

Late on Monday, I received a reply, confirming receipt of my email and stating that this had been passed to the trustees.  This went on to say, and I will copy the exact words from the email:

 

" Although you have been very active on the community board, which I know has been appreciated by many who visit the site, the reason you have not received the information is that you are not on the membership list.  I have checked the membership files and cannot trace receiving a membership update form from you.  This took place in January 2010."

 

As you may imagine, I was livid.

 

I could not respond as I was too annoyed and would simply have been rude.

 

Later on Tuesday afternoon, once I had calmed down, I composed a response.  I pointed out that I had completed the update membership form, but of course now had no proof and had received no confirmation from MSG.  I referred to the previous email exchange regarding the website in April 2013, where I had mentioned that I had been a member since 2008, but this had never been questioned at that time.

It all just seemed a convenient way of avoiding answering difficult questions.

There is no full membership list anywhere for me to be able to check my membership status.  So how was I to know without being told.  I am, and have always been, an active participant in the discussions on the MSG community boards, and why would I let my membership lapse and still participate so fully.  Surely it was incumbent on the administration of MSG to advise me if there was a change o my membership.

I also noted that the "buddy's" list, a list of people who can be contacted directly to provide help and support, had been updated and my details had been changed.  I queried why I had not been asked in advance of this change and who had given permission to make this change.

Irene has also stated on the MSG community board that the AGM "flyer" had been sent to everyone on the membership list, regardless of whether they are attending or not.  Since my previous blog 3 people have advised me that they are members but have not received the AGM "flyer".  More worryingly one person has advised that she has not had the AGM "flyer", and wanted to confirm that she was still member.  If she isn't this then raises an issue over why she was allowed to attend the AGM last year and vote!

Despite all of this, I pointed out that the issues I had raised in my earlier email were still pertinent and needed to be addressed.

I also advised that I had completed a new online membership form, and awaited acknowledgement of this.

To date, I am still waiting for a full response to either email.

I still remain a big supporter of MSG.  I think it is vital that we have a highly effective support group here in the UK, which provides support and help to patients and families, that encourages a vibrant community to raise awareness of these conditions, raising funds and supporting research. 

Sadly, we are a long way from this currently, and without some major changes, I am really beginning to fear for the future of this organisation.

So that's what has happened over the last few days.  As I have said before I have been amazed by the number of people reading the last blog and the support I have received.  I welcome any comments on any of my blogs but particularly on an issue like this, which is so important.

Please feel free either to comment here, at the bottom of the blog, or on the various Facebook pages where this is posted.

The Myositis Support Group

We are rapidly approaching the AGM for the Myositis Support Group (MSG) which is being held next weekend in Oxford.

 

Sadly due to the difficulties of travelling, I won't be attending, and frankly if it's going to continue to be this hot, I'd probably just melt away if I did go.  However there are a number of issues that people have been raising about this charity, that need to be raised at the AGM, and I'm going to use this blog to put forth my four pennies worth.

 

I first became aware of this group sometime ago when it was mentioned to me by my consultant, who asked if I was a member.  I had some scepticism about these sorts of groups, but actually found that after looking at the website and particularly the community bulletin boards, that it was quite a vibrant group, with lots of communication between members, offering support and advice.

 

I think I joined the group in 2008/9, but since then the group seems to have gone into decline, and the number of members using it has dramatically reduced.  Certainly, the website is long overdue an upgrade, and the bulletin boards, although easy to use, are not particularly user friendly, in that you cannot put in paragraphs, cannot edit, put in links to sites, blogs - the list goes on and on.

 

As a consequence many people have moved away from MSG and gone over to Facebook and the various support groups on there.  These put you in touch with people from all over the world, and allow much greater flexibility of use.  However, Facebook isn't to everybody's tastes.

 

And let me just say from the start that I think it is absolutely essential that here in the UK that we have a UK based support group.

 

At the AGM there are a number of issues that have already been raised for discussion in a "flyer" that has been circulated to those attending..

 

One of these is a proposed change of name for the charity from Myositis Support Group to Myositis UK.  In the "flyer" about this change it states:

 

"As the charity has grown it has been felt necessary to keep apace of how the charity is viewed by the general public, medical institutions and grant making bodies. It is considered that this change is a natural progression for the charity to make. However, within the charity the same commitment can be assured from all concerned."

 

However there is nothing about how this change of name is going to be approved or voted for, or indeed if there is going to be any discussion regarding this change.

 

The "flyer" goes on to mention the retirement of two of the charities trustees.  Again there is no mention of an election for replacement trustees, or if any have been nominated.  Currently the existing trustees are re-elected each year, and from what I understand, this is done by asking the AGM for approval for their re-election.  However for a new trustee of a charity there needs to be a vetting process, as outlined on the Charity Commissions website, and I would have thought a proper nomination process, and then a formal election.

 

Both the proposed change of name and the election of trustees are issues of such importance to the group that I would have thought that these needs to be open to all members not just those attending the AGM. 

 

When setting up a charity, or indeed any organisation, generally they need to set up some rules for running the organisation.  On the Charity Commission's website it states the MSG was set up with a constitution adopted on 13 April 1988.  However this constitution is not shown on this site or on the MSG website.  Therefore as members we are unable to know if the currently proposed changes are being done in a properly constituted manner, or to be able to challenge how they are done.

 

I'm not saying that the change of name might not be a good idea, or that we need new trustees, but we need to know that in making these changes and in electing new trustees to the board, that this is done in accordance with the constitution of the charity.  And again, I would have thought that both of these issues are of such importance that they should be open to all members to vote on, not just those attending the AGM.

 

Communication, from MSG to members is poor at the very best.  The "flyer" about the AGM, appears to have only gone to those people attending.  I have only become aware of it's contents because one of the members has posted a copy on one of the Facebook support pages.  However, in order that all members know what is going to be discussed, and in order that they can comment on any of the issues to be raised, I would have thought that this "flyer" should have been circulated to all members.  By not doing this, those not attending are effectively denied an opportunity to be included in any debate.  If the "flyer" were circulated to all members, then those not attending could offer there views and opinions, which could then be represented for them at the AGM. 

 

However, this seems to be indicative of the general communication issue.  The last Newsletter shown on the website is issue No. 68, which dates back to March 2012.  My understanding is that Newsletters are either circulated by post, or via email, depending on the members preference, but at the very least these should be accessible through the website.  I have never had a Newsletter, either in the post or via email.  Why haven't later issues of the Newsletter been posted on the website?

 

Similarly, Annual Reports haven't been posted on the site since 2007/08.

 

On the section of the website regarding meetings, there is a report on the AGM and mini-conference in July 2008, but nothing since then. 

 

I have personally sent emails to the MSG office, both to the general email address and directly to one of the trustees, and these have not been answered.  Other people say the same, and some have even complained about the telephone at the office not being answered.

 

A "Listening Ear" facility, where members can speak to other sufferers on a one-to-one basis was proposed, and set up, but seems to have disappeared.  When I emailed to volunteer to be included as one of the contacts, I got no response.  This facility should be an important part of the support network that MSG provide to members, but to me, it doesn't appear to be a priority.

 

At previous AGM's, shortcomings with the website have been raised and there have been promises that changes are going to happen soon, but we are still waiting.  I have raised this issue myself, again via email, and have again been told that a new site is being developed.  When pressed for a timescale on this, I was advised that they hope to be able to have it ready for the AGM.  In the Trustees Report and Financial Statement for the year ended 31st March 2012, one of the plans for 2012/13 was to launch a new website and EBay shop.  This new website is long overdue and if it isn't forthcoming at the AGM, then the board need to be asked some hard questions about, why it isn't ready and when it will be.

 

One of the other plans is to evaluate the Listening Ear.  That should be interesting.

 

Below is a full list of the plans shown in the report, which I would hope at the AGM the board of trustees should be reporting on the progress of:

 

"Attend meetings and conferences as appropriate throughout the year which have an interest in Myositis.

Continue to update all our information leaflets

Launch the new website and EBay shop

Evaluate the "Listening Ear"

Continue with our three main fund raising activities

Continue to maintain a good relationship with the medical profession

Plan celebrations for our 25th Anniversary in 2013 as a registered Charity"

 

There has been a huge decline in the use of the community bulletin boards on the website.  Some of this is the fact that these boards are not user friendly, and some will be the growth of alternative support groups on social media sites such as Facebook.  There have been numerous messages from people expressing their disappointment that these boards no longer seem to be used, and even some that have questioned the existence of MSG.  I wonder if the board of trustees ever look at these community bulletin boards, and take on board what is being said.  If they do, there seems to have been no response to put peoples minds at rest or to encourage greater use of these pages by saying what future developments are about to happen.  If they do not, then they should be.  In any event the lack of any response says to me that the board of trustees aren't listening to the members.

 

In the past people have stated that if they have stood up at an AGM and raised issues with the board of trustees, they have been cut short.  Some have even said that they have later been criticised by other members for taking issue with the board. 

 

The AGM is the forum to be able to raise and freely discuss issues.  The board should listen, and either comment there and then, or make a commitment, with a timescale, when they will respond in full to questions or points raised.   People should be heard, with respect to their point of view, and should expect a response.  The fact that there are members who support the board of trustees and have criticised those who have challenged them, only goes to show the goodwill that exists towards the board.  But this shouldn't be taken as licence to ignore members concerns.

 

Now given all the negatives, I've put down here, I have to acknowledge the work that has been done over many years in raising funds.  Based on the last 5 years accounts, MSG has raised well in excess of £350,000, and if you were able to look at the total raised over the lifetime of MSG, I'm sure the figure would be well in excess of £1,000,000.  Now in my opinion that's a bloody good effort when you think that the conditions we are talking about are rare and little known by the general public.

 

Personally, if I was at the AGM, I'd like to see the following raised:

 

1. Communication of information - Improve the way that the board communicates with members.  Notices for events, newsletters, etc need to go to all members, whether by post or via email, but at the very least, they should be posted on the website. 
2. Communication with the office - If telephones aren't being answered for whatever reason, this needs to be acknowledged and a solution found.  Similarly with emails.  If help is required, I know that people have offered help previously, why isn't this take up.  If there are times when phones or emails cannot be answered, no one is going to mind, as long as members are aware of this, and can be assured that they will get an answer within a reasonable timescale.
3. Constitution - The written constitution for the charity should be a published document, available to members on the website.  How else are we to know if the board is conducting the business of the charity correctly - such as the change of name and voting for new trustees - and how are we to know the procedure if we feel something has not been done in accordance with the constitution.
4. Website - What is the position regarding the new website and when can we expect it.  Has any new site been seen by any members, and what feedback have they given.  If the new website hasn't been "tested" by members, in my opinion a work group of volunteers - and I'd be willing to put my name forward - needs to be formed to test and feedback, with a view to maximise the user input into the usability of the new site.  We don't want to get a new website and then find it doesn't live up to the expectations of the users, and put us back to square one.  The website is a key interface between members and the charity, whether its member to member, or member to board, and the charity cannot afford to get this wrong.
5. Listening Ear- What is happening with this?  Does it need to be re-organised and then re-launched.  Why isn't there more about this on the website to promote its use.
6. Listening - Is the board listening to the concerns of members?  They can see these clearly from the community pages and many of the recent comments posted.  It isn't sufficient to just read these comments and not respond, because members just feel they are being ignored.  The board needs to respond, and to ensure action is taken, so that members feel they are being listened to, and that their feedback is appreciated.  No one like criticism, but if you don't listen to your members, pretty soon they will vote with their feet and go elsewhere, as in the case of Facebook.  And criticism isn't always a negative thing, it just depends how you use it.  When I was working we had a policy of "continual improvement".  This meant listening to customers and staff, and responding to the issues, complaints, even compliments, in order to keep our business moving forward.  The same can easily be applied to a smaller organisation such as MSG.
7. Board of Trustees - Is now the time to have a trustee from the members of the charity, to represent the views, feelings and concerns, or ordinary members.

I think MSG is at a bit of a crossroads, and that unless it starts to respond to the concerns of members, things might start to fall apart.  That to my mind would be a crying shame.

 

Irene and Les have run MSG, for the past 25 years, and their efforts and hard work should not be understated.  To have consistently raised the funds, to have supported organisations, and have provided a point of reference to myositis sufferers here in the UK, is no small feat.  They should be thanked for their efforts and supported and encouraged to move the organisation forward.

 

But everything has to change, and evolve with the times.  And now might just be that time for MSG.

 

I'm not suggesting that Irene and Les should be moved aside, far from it.  Now should be the time for them to welcome new blood and new ideas onto the board of trustees, in order to keep MSG relevant and help grow and develop, from the foundation they have set.  Their contacts and knowledge are invaluable to this charity and to lose that would a disaster. 

 

But also to do nothing, to maintain the status quo, would similarly be a huge mistake.

 

Finding new people to help, or to become trustees, won't be easy.  Its time consuming and for sufferers with fatigue issues, it won't look like an option, but there are people out there willing to help and support this charity.

 

Letting MSG fall further shouldn't be an option, we desperately need a support group here in the UK.  But we need it to be something that members can use and also can input into. 

 

With this being the 25th Anniversary of MSG, it is the perfect opportunity to look forward to where the charity is going and to have an open debate about carrying it into the next 25 years.  All options should be considered, and all should be openly discussed.

 

I wonder if an option worth looking at would be to split the organisation so that one side has the funds raising responsibility, giving grants and donations, and the other looks at the support of patients, families.  The two could still be linked, with financial support from one given to the other, and common aims, but the activities could then be done by different boards.  Certainly the support side could more easily be run by members.

 

These are just my thoughts.  I'm sorry I can't be at the AGM, not only because I would enjoy this sort of debate, if it is allowed, but also for the opportunity to meet many of the great people I have got to know over the last few years through MSG.

A visit to my GP and a demo of a stand up wheelchair

I had a busy day Monday, which meant an early start.  Unfortunately, Margaret my carer, who had been working all weekend, during the curent heat wave, had overslept which meant that Mum started to get me up and into the shower before Margaret arrived.

 

After getting dressed and having breakfast, I was off down the road to my GP's.  The medical practice is just under a mile away and it takes me about 10 minutes to get there.  Once I've negotiated the doors, and got past the queue at reception, I asked one of the people waiting if she would help me with the computerised appointment check-in system, which is just a bit too high for me to be able to reach.  Once I've been checked in its just a case of waiting to be called, so I find myself a place to sit and wait, where I won't be in anyone's way.



 

Old Coulsdon Medical Practice

 



I am currently the Chairman of the Patient Participation Group (PPG) at the practice.  One of the things we have been instrumental in bring in is an electronic system for the doctors and nurses to call patients in for their appointments.  Previously the  doctors had to come into the waiting area and ask for patients, which took up time, especially for the doctors in the upstairs examination rooms.  The new system has been in place for about 6 months, and seems to be working very well, and the feedback we have from both patients and doctors is very positive.

 

My appointment was for 9.00 am but it's just gone 9.15 am before I'm called in to see my doctor. 

 

My previous GP, had retired last year because he had become dis-illusioned with all the unnecessary bureaucracy that the government was pushing onto family doctors.  He had only just turned 50 and was an excellent doctor, and everyone agrees that his retirement was a huge loss.

 

Luckily, I have been transferred to another excellent doctor, who is probably just slightly younger than me.  I have known him for quite a while through my work with the PPG, but he has only been my doctor for about a year.  On the real plus side, when I first met him he was interested to talk to me as he had given a lecture to some trainee GP's previously regarding auto-immune diseases, and specifically about Dermatomyositis.  He was also aware of Inclusion Body Myositis but admitted that he needed to learn some more.  He has gone away and read a lot about IBM, but often asks me questions about the condition when I see him.

 

My appointment today is the regular 6-monthly appointment to review my drugs.  It always seems to be a bit of a waste of his time as realistically he isn't going to change anything without my consultants say so, but it is something that he has to do.  He takes a couple of things off my repeat prescription list, which I haven't needed for a while, and adds a few things on, which I have found I've needed on a more regular basis.  He also does a prescription for my Methotrexate and some creams, and then does a separate one for a new set of compression stockings.

 

We discuss Andy Murray's Wimbledon win, which seems to be the main topic of conversation everywhere this week.  He asks me how I am coping with the current hot weather we are having, and I tell him I hate it, as it just wears me out and I just burn in the sun.  He recommends a couple of sun cream products, P2- and Ultrasun, which he explains only need to be applied once a day, and that because of the chemical composition, aren't oily or greasy.  He does say that they are more expensive than regular sun creams but the fact that they only need to be applied once may be a worthwhile benefit.

 

He then says that as I am on drugs for high blood pressure, the government now requires that once a year he must ask me some questions relating to my lifestyle and activities.  These basically go like this:

 

Doctor - Do you work?

 

Me - No

 

Doctor - Is your work strenuous?

 

Me - I've just told you I don't work.

 

Doctor - How much organised exercise do you do?

 

Me - I'm in a wheelchair full-time, how much do you think?

 

Doctor - How far do you cycle each week?

 

Me - Are you taking the piss?

 

At this point he abandoned the questions, which are pre-set, and as specified by the government, have to be completed on the computer.  He uses his judgement on the remaining couple of questions, and the conclusion is - I should cycle more!!  At this point I say its no wonder my previous GP had retired if this is the sort of rubbish they are now being asked to do.  He agrees, and apologises for having to ask but says that if he doesn't then data is fed back that the practice isn't asking enough patients with high blood pressure to complete these questions, and this then impacts how much money the practice receives per patient.

 

All this has taken about 10 minutes, which is the standard appointment time, so I'm not holding any one up. 

 

I leave the practice and go across the road to Tudor Parade and to the chemists, who take my prescription and they will deliver this once it has been put together.  I need to get my legs measured for the compression stockings, as these are made-to-measure, so I will get Margaret to measure my legs first thing in the morning and then drop this back later in the week.

 

Tudor Parade

 



I then go to the bakers and buy a donut, for mum, and an eccles cake, for me, which I take home and we can have with our coffee.

 

A Donut

An Eccles Cake

 



After coffee, I get onto my computer and check my emails and look at Facebook.  About 11.30 the chemist's delivery van pulls up and they deliver a prescription for mum and my prescription that I only dropped in this morning.  That's what I call service!

 

Just after 12.00, a car pulls up onto the drive.  I have an appointment at 12.00 with a representative from a company called, Gerald Simonds Healthcare Ltd, who is going to demonstrate and allow me to use a stand up wheelchair.  The wheelchair we are looking at is the Levo C3 Stand Up Powered Wheelchair.

 

Levo C3 - in the normal position

 

Levo C3 - in the standing position

 



He unloads the wheelchair from his car and brings it round into the house, up the ramp at the patio doors.  He just goes through how it works and demonstrates the stand up function.

 

Although I have measured the dimensions of my current chair and compared these to the dimensions in the brochure, the chair seems larger than expected.  However when we sit the two side by side it's clear that this new chair is in fact slightly smaller than my own.

 

I attempt a transfer from my current wheelchair straight into the Levo C3, but this isn't possible as there is too bigger difference in the height of the seats to make this possible.  So I then transfer from my chair onto my bed, which I can raise and lower to the required height, to make the transfer into the Levo C3.  Although I manage the transfer, it isn't easy, and I did need some physical help in accomplishing it.

 

Once in the Levo C3, it is very comfortable, and the controls are simple and easy to use.  I have a little drive round.  My current chair has 4 wheels with the power through the back set of wheels and steering through the caster wheels at the front.  The Levo C3 has 6 wheels, with the power through the center set of wheels and direction through the caster wheels at the rear.  This makes driving the chair slightly different, and will take a bit of getting used to.

 

Having driven round indoors and made sure that I can get in and out of all the rooms, especially the bathroom, I try the stand up function.  There are knee braces on the chair, which hold the knees in place and provide support.  There is also a chest strap to hold the user in place against the back of the seat as they stand up.  Then its simply a case of taking the controls out of drive, by pushing a button, and then pushing the joystick forward, and the chair starts to support you and stand you up.  Its very easy to control, and you can go as far up as you like, stopping as required, and getting yourself to a comfortable upright position.

 

The chair is very heavy, 310 lbs, but this gives it great stability even when you are fully upright.  So much so that you can drive round even when stood upright.

 

The feeling is fantastic.  I haven't stood up at home for over 5 years and it was strange to suddenly see my home from an upright position.  I'm 6ft 2inches and with the extra height from the chair, when I'm stood up in it, I'm probably an extra 3 inches higher.  It certainly felt easy standing, and the ability to be able to lean the seat back, means you can take some of the pressure off your knees and feet if you need to.

 

Margaret, had come to help with my transfers during the demonstration, and she has never seen me stood up before.  She had a great big grin on her face.

 

After having stood, and driven round a bit in the standing position, which feels very weird, I sit down again and go for a quick spin outside.  Again its easy to manoeuvre and has a top speed of 10 kph and a range of 21 miles on the basic model.  Sorry if I'm getting to "Top Gear" for you.

 

We then try another transfer, onto my shower chair, which will be the most frequent transfer I do from the wheelchair.  We identify that the seat needs adjusting, as I am sitting to far forward in the seat.  Whilst the rep makes this adjustment I get back into the shower chair and go to the toilet.

 

With the adjustment made to the seat, the transfer is very much easier. The rep also shows me the base of the seat which has a slight lip to it, and he states that they should be able to supple a fully flat seat, without the lip, which will help make transfers easier.

 

I then transfer out of the Levo C3 and back into my wheelchair, which is "downhill" and therefore no problem.  Margaret leaves at this point, still grinning about how tall I am and how good it is to see me standing.

 

Then we talk about the price.  As a ball park, the Levo C3 in the set up I would require, would be in excess of £13k, but it is available through Motability, which will significantly reduce the cost to me.  The rep will go away and work out the figures and will email me with the full cost and the costs through Motability.

 

This whole demonstration took about 2 hours.  The rep was very patient, and was able to answer all my questions.  He made any adjustments I needed or suggested to make using the chair, and getting into and out of the chair easier.  There was no pressure on me time wise or to commit myself in any way.

 

Monday was a really hot day and having done all of these transfers in the middle of the day when it was hottest, completely wore me out.  After a quick lunch, I got into my armchair and slept all afternoon.