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.

 



7th July 2005

At 8.50 am, on Thursday 7th July 2005, a co-ordinated attack on London's transport system left 52 civilians and 4 suicide bombers dead and over 700 injured.

 

The day before I remember being in the office and listening to the announcement that London had just been named as the host city for the 2012 Olympic Games.  Apart from a few naysayers, there was a great feeling of excitement and optimism following the announcement and the opportunity this presented to London.  Many people went out that night to celebrate the news and to enjoy the early Olympic feel-good factor.

 

The following morning, I was up as normal at 5.00 am, washed and showered.  Having had my pills, a banana and a cup of tea, I was in my car and on my way into London to work, by 6.00 am.

 

It was a normal uneventful journey into work, and I knew that by leaving just on 6.00 am, that I'd have a pretty clear run, up to London, over Tower Bridge, and be parked by the office, just before 7.00 am.  From the car, which I could park in a disabled bay in Portsoken Street, I had less that 50 metres to walk to the office and on the way pick up a bacon and brown sauce roll and a carton of orange juice, from the deli below the office.

 

I was working at this time for a company called CMGL, as a Business Analyst/Project Manager.  We were based in Ibex House, which is at the southern end of the Minories.  Ibex House is an Art Deco design office block built in the 1930's and is a real gem, one of the reasons why when you walk round London, its always worth looking upwards. 

 

The story goes, and I don't know how true this is, that during WWII, Hitler instructed the Luftwaffe not to bomb Tower Bridge or the Tower of London, but also not to bomb Tower Hill, as he liked Ibex House and wanted it as his command centre in London after the German army invaded.  (Not sure if that's a claim to fame or not).

 

Ibex House

The entrance to Ibex House

 



I was at my desk by 7.00 am with a cup of tea, and after eating my roll and drinking my orange juice, I started to prepare for my day.  I looked on the internet for news and comment on the Olympic announcement as I ate my breakfast.

I remember that I had to prepare a pricing model for a new business proposal that was being worked on, ready for a meeting that I had with one of the Business Development team at 9.00 am.

 

For the next hour or so nothing much happened.  A few people drifted in, but mainly the office was nice and quiet, which allowed me some peace and quiet to get on building my computer pricing model.  It was something I'd done many times before, and this proposal didn't include anything particularly complicated or unusual, so I was able to get it done with time to spare.  I always said that between 7.00 and 8.30 was my most productive part of the day, as most people weren't in, the phones weren't ringing and my energy levels were at their highest.

 

I started to get my papers together for the meeting, but did notice that by 9.00 am, the office didn't seem as busy as usual. 

 

And then the news started to break.

 

At 8.50 am, three bombs had been detonated within 50 seconds of each other on London's Underground System.

 

The first had been detonated on a train between Liverpool Street and Aldgate.

 

The second was on a train that had just left Edgeware Road, travelling to Paddington.

 

The third occurred on a southbound train from Kings Cross-St Pancreas to Russell Square.

 

Initial reports had suggested that there were 6 explosions, but this was caused by the fact that the explosions had happened in the tunnels between stations and that passengers had evacuated the trains and emerged from both stations.

 

Aldgate Station was within 500 metres of the office, and was the route many staff took, if they could not walk from their mainline station.  As news came in, people looked round to see who wasn't there, and the natural worry for peoples safety began.

 

Almost an hour after the first explosions, another bomb was detonated on board a double-decker bus in Tavistock Square.

 

Over the next hour or so, people turned up having found ways into work, round the disaster sites.  All the mobile phone systems in London were shut down, over fears that these may have been used to trigger devises, so it was difficult to make contact with people, to find out where they were.

I phoned my mother, in Dorset, early to let her know what had happened and that I was OK.

Police advised companies to keep staff in the offices until they were sure that the threat was over.  I rang my friend, Paul, and offered him a lift home, once we were able to get out of the office.  I then contacted a couple of guys who lived near me, to see if they wanted lifts home.  I anticipated that once the all clear was given, public transport out of London would be swamped.

By about 10.30 am, it was clear that everyone from the company had arrived safely.

I met with the guy from Business Development, who was clearly very shaken by what had happened that morning.  He usually travelled into London from the Midlands, and would normally have been on a tube to Aldgate, about the time the bomb had gone off there.  The evening before he had been to an Insurance Institute Dinner in London, so had stayed in a hotel and on that morning had taken a different route into work.  Within days he handed in his notice, and worked from our Birmingham office, until he left.

Work didn't seem very important that day.  People were more concerned with making contact with  friends and family, and ensuring they where alright.  Some work was done, but it wasn't a priority.

About 3.30 pm, the police gave the all clear, and people started to leave and make their way home.  I filled up my car, and began the journey south.  The roads just outside of central London, were packed as police had restricted entry into central London.

After dropping everyone else off, I went to Paul's and sat and had a cup of tea with his wife and family.

It was a strange day, an unusual day.  It had started with joy and excitement about the Olympics, that turned to horror as the news of the bombings broke, and then to concern over the safety of friends and colleagues.  There wasn't a sense of relief at being home, at the end of the day, but it did start to put lives into perspective, to make you look at your priorities.

The emergency services responded brilliantly that day, as did the staff in hospitals were the injured were taken.  London was lucky that they did, and also lucky that the bombed bus in Tavistock Square was so close to the headquarters of the British Medical Association, from were doctors and medical staff  rushed to the scene to provide emergency medical assistance.  Without this and many other acts of selfless heroism, the death toll could have been much higher.

The 52 victims of the attacks were mainly London residents from a wide range of backgrounds, and aged between 20 and 60.  They were just in the wrong place at the wrong time.

 

So as we enjoy a hot summers day here in the UK, spare a minute to remember what happened 8 years ago, and those people who lost their lives and the countless others, whose lives were ripped apart through loss or injury.

Aldgate:

 

Lee Baisden (34)  Benedetta Ciaccia (30)  Richard Ellery (21)  Richard Gray (41)  Anne Moffat (48)  Fiona Stevenson (29)  Carrie Taylor (24)

 

Edgware Road:

 

Michael Stanley Brewster (52)  Johnathan Downey (34)  David Graham Foulkes (22)  Colin William Morley (52)  Jennifer Vanda Nicholson (24)  Laura Webb (29)

 

Russell Square:

 

James Adams (32)  Samantha Badham (35)^[7]  Phillip Beer (22)  Anna Brandt (41)  Ciaran Cassidy (22)  Elizabeth Daplyn (26)  Arthur Frederick (60)  Emily Jenkins (24)  Adrian Johnson (37)  Helen Jones (28)  Karolina Gluck (29)  Gamze Gunoral (24)  Lee Harris (30)^[7] Ojara Ikeagwu (56)   Susan Levy (53)  Shelley Mather (25)  Michael Matsushita (37)  James Mayes (28)  Behnaz Mozakka (47)  Mihaela Otto (46)  Atique Sharifi (24)  Ihab Slimane (24)  Christian Small (28)  Monika Suchocka (23)  Mala Trivedi (51)  Rachell Chung For Yuen (27)

 

Tavistock Square:

 

Anthony Fatayi-Williams (26)  Jamie Gordon (30)  Giles Hart (55)  Marie Hartley (34)  Miriam Hyman (31)  Shahara Islam (20)  Neetu Jain (37)  Sam Ly (28)  Anat Rosenberg (39)  William Wise (54)  Gladys Wundowa (50)

 

Mobile phones - for better or worse!

There has been a couple of pieces in the news over the last few of days, about a lady who went shopping at her local Sainsbury's store.  When she got to the checkout, the girl at the till refused to serve her until she ended the call she making on her mobile phone. 

 

The woman ended the call and was served, but then went and complained to customer services.

 

Rather than back their member of staff, Sainsbury's apologised to the lady and then offered her a £10 voucher.

 

To be honest I wouldn't have had this problem, because I have manners, and wouldn't be using my mobile, whilst a shop assistant is trying to help me.  If the call was so urgent that I needed to take it, I'd have stepped out of line and asked the next person to go in front of me.

 

What annoys me about this is the fact that Sainsbury's, by apologising and offering a voucher, seem to be agreeing that this sort of rude and anti-social behaviour is acceptable.

 

And this got me thinking about mobile phones and how they seem to have changed the way we do things, and are changing what we think of as being acceptable.

 

Recently whilst going to hospital, there was a phone-in show on the radio, where they were discussing how many 10 and 11 year olds who were walking to school were injured because they were texting or browsing the internet on their mobiles, and simply walked out into the road.

 

As I'm listening to this, and thinking that when I was that age, although there was considerably less traffic on the road, we had road safety drummed into us, we rounded a corner, just as a guy, probably in his late 30's, stepped out into the road in front of us, texting on his phone, with earphones in, listening to his iPod.  He was completely unaware of us, even when the ambulance screeched to a halt.  He didn't even look up.

 

They went on to say how many injuries are caused each day by people walking, and concentrating on their phones, and then walking into lamp posts, post boxes, other people, and even falling down holes, where engineers are working in the street.

 

Surely people only do that for comedy value, and for silly video's on YouTube.

 

How often have I had to swerve my wheelchair, to avoid someone talking or texting on their phone, because they are oblivious to the fact that I'm there.

 

And then my solicitor came to see me a few weeks ago.  Her office is in a listed-building and simply cannot accommodate my wheelchair, so if anything needs signing she comes to me.

 

On this occasion she was a little bit late, which she apologised for, and then explained that her previous client had been late for her appointment at the office.  Rather than apologise, the client stated that it was the solicitors fault, because she hadn't sent her a text reminder of the appointment, like her doctor or dentist does.

 

This wouldn't happen to me, because I have a fully functioning brain, which allows me to remember appointments.  In the event that me brain isn't functioning at its normal high capacity, I have a back-up system, called a diary, which allows me to record these appointments, so each day I can look and see what I need to be doing that day.  Even better there is a diary on my mobile phone, which sends me reminder messages, so I can't forget.

 

Mobile phones have certainly changed a lot about how we communicate and interact with each other, but not all of these changes are for the better.  They shouldn't be an excuse to be rude or anti-social, or a reason not to be aware of our surroundings.  We still need to take responsibility for ourselves and our actions.

 

I think mobile phones have probably changed many things for the better, but wasn't it nice being able to go out of the front door and know that no one could get hold of you, until you got home again.

 

Equipment, Social Servces and a long sad story of a shower chair!

Sometimes getting the equipment we need to be able to live our lives as independently as possible is difficult.  If you are purchasing it yourself, you need to ensure that you are getting the right "thing", that it will do what you want and that you are getting value for money - it's not cheap being disabled.  Even when Occupational Therapists, or Social Services are involved in purchasing equipment, it is often a long drawn out affair, with delays, quibbles over budgets, and then the wrong thing being delivered.

 

With the current austerity measures and the cut backs in local authority budgets, obtaining equipment through your local Social Services is going to become more and more difficult.  However, some of these problems with equipment go back well before this current economic crisis, and are more of an indication, to my mind anyway, of how Social Services fail people, and in some cases how the staff simply aren't up to the job.

 

Back in 2002, I spent 6 weeks in hospital, in the Royal Free Hospital in north London.  I had been very ill, spending 5 days in intensive care, and had a quite a hard recovery, involving lots of physiotherapy, and getting me back walking using sticks.

 

Towards the end of my stay, the doctors and nurses, wanted to ensure that I had certain pieces of equipment at home, so that I would be OK when I got there.  In order to make sure this was in place they needed to discuss my needs with my local Occupational Therapists, in my borough in Croydon, south London. 

 

However the local OT's would not supply equipment until I was home and they could assess my needs.  The hospital staff pointed out that it wasn't safe for me to go home, without the equipment being in place first, and that they wouldn't discharge me until they knew the equipment was there.

 

So for about a week we had this stalemate.  The doctors wouldn't discharge me until the equipment was in place, and local Social Services wouldn't supply the equipment until they could assess me at home, but I couldn't go home because I needed equipment in place first.

 

Eventually, out of frustration, I asked the doctors for a list of what was require - raised toilet seat, a rail to go round the toilet, grab rails, bed lever, etc - nothing unusual, all fairly basic things.  I gave the list to my Mum, along with my credit card, and she went to a local equipment supplier and purchased it.

 

Having bought the equipment myself, and assured the doctors that it was all in place, they discharged me, with an assurance that the local Social Services would visit to assess my needs, urgently, as soon as I was home.

 

Ten days later, one of the OT's from Social Services came out to assess me.  She went round and looked at all the equipment that I had purchased and said, "We could have supplied that."  In the end she advised that I had all the equipment I needed but that they could have supplied this.  I pointed out the fact that they wouldn't supply the equipment before I left hospital and she advised that this was there normal practice, even if someone needs equipment before they can be discharged.  I asked her if 10 days constituted an urgent assessment, to which her response was it was as soon as they could do it, and  anyway I had all the equipment I needed so it wasn't a problem.  I then presented her with the invoices for the equipment, but she stated that they could re-imburse me for things I had purchased myself as they could have supplied these from their stores.

 

At this point I almost blew a gasket.

 

This lady is now the senior manager responsible for Adult Social Services in the local borough!

 

Shortly after this a new OT, called Sue Horner, took over my file.  Sue was very good, and usually did things and got equipment quickly and efficiently.  If she didn't do something, she wouldn't fob me off with some lame excuse, she'd put her hands up and say she'd forgotten, and then get straight on it.

 

When I was in Rehab, in 2008, there were certain adaptations I needed done at home, so that the property was accessible to me in a wheelchair - a ramp, changing the kitchen access and layout.  In order to start the ball rolling, Sue put me in touch with someone from the Major Adaptation Unit.

 

This lady came and visiting me in the Rehab centre, and I filled out forms for a financial assessment, to see who would pay for the work. We also discussed in outline terms what work was required.

 

A couple of days later, she rang me to say that the financial assessment was all OK and that Social Services would pay for everything.  I was surprised by this but wasn't going to argue.

 

We agreed to meet at home, on one of my trips home from Rehab where the centres OT's and Sue meet to look at my equipment needs.  At this meeting we looked at what might be required in terms of a ramp, and also with regards to the kitchen.  The more we discussed it, the less I liked what was being proposed.  It was obvious that I was going to have very little say in the work that was going to be done, and the timescale for completing the work could be anything up to 2 years.

 

Anyway, after further discussions, I was asked to complete another financial assessment.  I gave them exactly the same details, but this time I was told I'd have to pay for everything.  I queried why, when I had given the same information as before.  If the rules had changed for granting financial assistance, which they hadn't.  I couldn't get an adequate response.

 

I ended up paying for all the adaptations and got what I wanted done, in a reasonable timescale.  In fact I got a better quality and better equipped kitchen than I would ever have got from Social Services.  I could control when, who and how the work was done, and ensure it was done to a high standard.

 

Within 3 months of leaving Rehab all the adaptations were complete, rather than the 2 years it could have taken with Social Services doing it.

 

Sometimes, I get the feeling with Social Services that they promise you something that you need, and then take a long time in supplying it.  Being cynical, I think they sometimes do this deliberately, so that you get sick of waiting and go and get it yourself.

 

During a period when Sue was off ill, her manager took over getting a piece of equipment for me - I can't remember what.  After waiting and waiting, and numerous phone calls chasing her up, I finally got hold of her.  I expressed my annoyance at the amount of time things were taking, and went onto say that I did not think that she was actually doing anything to get the equipment, and if that was the case couldn't she pass my file to someone else to handle.  She agreed, quite matter-of-factly, that she wasn't doing anything on getting my equipment, as she was to busy. 

 

Fortunately by this time Sue was back at work and my file went back to her.

 

However the worst case of delay on a piece of equipment was regarding a replacement seat for my commode/shower chair.  For those of you unfamiliar with these, there is a cushioned seat to these chairs which is detachable, and the material had started to split.  This could rub on my bottom when I sat on it, making my bottom sore.  It is also important that the seat is of a certain height to ensure that it is level when I come to do transfers to and from my bed/wheelchair/armchair.

 

I kept a log of what happened, so know exact dates.

 

26th October 2011 - Rang Sue to advise that the seat needs changing as the material is splitting. 

 

31st October 2011 - Sue rang to arrange to come out and measure the seat.

 

1st November 2011 - Sue visits and measures the seat.

 

10th November 2011 - Sue brought a new seat.  This is higher that the original, which will make my transfers more difficult.  Sue will arrange to have a new seat made at the correct height.

 

9th January 2012 - Sue rang to say that the company who will make the new seat need to come out and measure the seat to ensure they get it right.  Sue also advised that she is retiring and my file is going to be passed to some else - she doesn't know who.

 

29th February 2012 - Tana Ellis rang to say she has taken over my file and wants to come out and visit me.

 

7th March 2012 - Tana rang to advise she can't come as advised but made a new date.

 

12th March 2012 - Tana visited.  She obviously hadn't read my file before coming as we needed to go over everything again.  She found the quote for the new seat on the file and advised that this needed to be submitted for approval of the funds.

 

1st May 2012 - I rang Tana and left a message for her to ring me to let me know what was happening.

 

1st May 2012 - Tana rang back and advised that the quote was being submitted for approval tomorrow.  Could not, or would not, say why it wasn't done sooner.

 

4th May 2012 - Tana rang to say quote not signed off but thinks it was an oversight and she will discuss with her manager next week.

 

11th June 2012 - Tana rang to say quote for seat has been approved and order being put in.

 

26th July 2012 - I rang Tana to find out what is happening with the seat.

 

26th July 2012 - Mandy from EuroMobility - who are making the seat - rang and advised that they have outstanding queries regarding the seat but cannot get the necessary answers from Social Services.  I gave her the necessary dimensions and she agreed to get the seat made up ASAP and this should be in the Croydon Social Services store in 2-3 weeks.

 

16th August 2012 - Tana rang to advise that the seat is now in stores and will be delivered next week.  She is away until beginning of September.

 

5th September 2012 - Rang Tana and advised seat has not been delivered.

 

5th September 2012 - Stores rang and they will deliver seat tomorrow.

 

6th September 2012 - Seat delivered.

 

6th September 2012 - Tana rang to arrange to come out to see seat.

 

10th September 2012 - Advised Tana that new seat is too soft which makes moving difficult and that it is uncomfortable to sit on - actually so soft that I was sitting on the base of the seat.  She advised that she will need to get the company rep to come and have a look at the seat.  In the meantime I requested that the old seat be returned to me or else my bottom will become sore.  Tana advised that she is not now in the office until 13/09, and I asked if there was no one else who could deal with getting a replacement seat to me.  Expressed my annoyance with the length of time this was all taking.

 

10th September 2012 - Tana rang to advise temporary replacement seat has been ordered and should be delivered tomorrow.

 

11th September 2012 - Temporary seat delivered.

 

12th September 2012 -  Tana rang to check seat delivered and to arrange for company rep to come out.

 

18th September 2012 - Tana rang with date for company rep to come out.

 

26th September 2012 - Tana rang and advised she cannot make arranged date but her manager, Jennifer, will come in her place.

 

2nd October 2012 - Rep came and looked at seat and said it was too soft. She has taken replacement seat away and will get a seat of those dimensions made but with a harder cushion, which she said it should have.  Jennifer came in at end of conversation and agreed to rep going ahead and making the replacement.

 

16th October 2012 - Tana rang and advised that the company no longer makes hard foam seats.  Their solution is that they provide a lower seat frame and then the thicker seat will be at the same height.  She will arrange for Wendy from the company to come out and discuss.  Gave Tana dates when I won't be about.

 

5th November 2012 - Rep and Tana came.  They took away the original seat and will get one made at that height and density of foam.

 

11th December 2012 - Rang Tana to find out current position.  She only got the quote on 5/12 and will be put to panel tomorrow to be signed off.

 

12th February 2013 - Rang and left message for Tana to call

 

18th February 2013 - Tana rang and will chase up what is happening with the seat.

 

21st February 2013 - Tana rang and advised that the seat is now in stores and she will arrange to get delivered.

 

26th February 2013 - Stores rang and seat will be delivered tomorrow

 

27th February 2013 - Seat delivered.

 

27th February 2013 - Seat is to high.  Tana is away so rang stores and asked if they could return previous seat.

 

28th February 2013 - Sue at stores rang back and is still trying to find seat and has asked driver to look for them when he returns.  She will call back.

 

28th February 2013 - Sue at stores rand and replacement seat will be delivered tomorrow.

 

1st March 2013 - Driver delivered back a replacement seat.  This is different from the one he took the other day.  The original seat, with the split cover was 22.25 inches from the floor to the top of the cushion.  The custom made cushion was 22.75 inches from the floor to the top of the cushion.  This is over half an inch higher.  The replacement cushion just brought back is 22.5 inches from the floor to the top of the cushion, and the foam is hard as I require.  I will test over the weekend to see if it is OK before discussing with Tana.

 

4th March 2013 - Rang Tana and advised that I now have a cushion that is OK.  But that this had come straight out of stores, and wasn't custom made.  She will come out and look at new cushion.

 

There may have been some other calls chasing for updates on what was going on which I didn't record.

 

Eventually about 3 weeks after this Tana came out and looked at the new cushion.  She couldn't give me any explanation why there was an acceptable cushion in stores, that could have saved us all this time and aggravation.  I expressed my annoyance at the time this had all taken, to supply what is after all a fairly basic piece of equipment.  Rather than apologise she just went to to say it wasn't her fault and she'd done everything she could to get me the right cushion.  When I asked if 18 months was an acceptable timescale for delivering a shower seat cushion, she just repeated that it wasn't her fault.

 

About 4 weeks after Tana's visit, the old seats were finally picked up and taken away.

 

What is really troubling about this is that a replacement seat for a commode/shower chair is a standard piece of equipment but still took so long for them to get it right.  There seemed to be a complete lack of concern to get this right by Social Services, or the company who were supposedly custom making the cushion.

 

I can chase these things, I can fight my own corner, but what about the people that can't, or haven't got someone who can chase these things up for them.  Do they just have to accept what they get.

 

I've written and complained, but so far I've not even had an acknowledgement.  Why am I not surprised!