MRSA Support - NEWSLETTER SAMPLES

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NOVEMBER 2003 NEWSLETTER
Dear Member

Once again we have much to report. First of all, I must thank all those who have joined over the past two months. We have now (end of October) 108 members in total. This is remarkable because at the beginning of September there were just 25 of us based in the midlands. We now have representation over the whole country.

PATIENTS COUNCILS
Due to all the publicity for us over the past few weeks, one of our members, Dr Penn, invited me to a meeting of the local Hospital Patients Council for which she holds the chair. This council consists of senior hospital staff and representatives of the patients, along with the hospital chaplain. During the meeting I attended there was discussion of topics ranging from ward cleanliness to new equipment, access, and the new development for the Public/Private partnership on the existing site of the Queen Elizabeth Hospital. A manager of the hospital gave a presentation of the proposals. He was questioned in some detail about the designs and their merits, but real detail was lacking and we were told that there would be a better presentation on November 26th. Our interest centred on the infection control aspect but there were no details available vis-à-vis the designs and contingencies for this. As we all know the devil is in the detail and we will keep you posted as to whether lessons from MRSA have been learned.

Also, the council is charged with inspecting wards. I understand that recently a ward in Selly Oak Hospital was closed down and cleaned on its recommendation.

My understanding of the status and hierarchy of how the councils fit in to the health service is sketchy, not having heard of them until Dr Penn contacted me. It would seem to be a government directive that all hospitals should have a Patients Council. But, the new foundation hospitals can choose whether to institute them!

What a strange world we live in. If any one can explain further or help our understanding please write in. We need your comments!

Also, while on this subject can I urge you to ask about these councils in your area, and let us know what the situation is with them? Better still get on to them and put our case forward for a better quality of hygiene.

THE VACCINE
The talk by Dr Ahmad was not well attended, but those who came were treated to a fascinating insight as to how the bacterium developed itself to counter the antibiotics over the decades. Two points came out of the talk which I found important were:
1) The bacterium does not like, and cannot survive in a totally dry state.
2) It is so easily controlled if we are all vigilant with hygiene.

Dr Ahmad spent some time explaining the way Staphylococcus Aureus lives and propagates. She showed how it has sugary coating with spikes protruding to give it the ability to anchor itself to most surfaces such as metal and bone. Once settled it sets about reproducing and can from one cell become over a million in ten minutes in the right circumstances. She also gave us an overview of the current state of research. Vaccine Research, the company she and Dr Skinner run, is working on a method of stimulating the immune system to attack the bug immediately it enters the body. The Americans on the other hand are slightly more advanced in their research on a vaccine, which will help the white cells in our blood to attack and break down the sugary coating.

Some statistics, which she quoted, were incredibly alarming.
In the UK:
1989-90 1.5% of patients infected by MRSA
1995-96 13.2%
1997-98 31%
Present 32%

In other countries the variation is enormous. The Scandinavian countries are by far the best as the incidence of MRSA is so low it isn't recordable. But for the United States it is 28%, the UK 32%, Belgium 40% and Japan 70%! So if the NHS offers you a hip operation abroad, clearly you should ask for it to be done in Scandinavia and definitely do not fall ill or require an operation in Japan!

One final point I would like to make, is that when the research is finalised and all the trials have been completed… Vaccine Research must find £150,000 to pay the government for a licence to market the vaccine. I think this is immoral and we should all write to our MPs to complain that the government is impeding research by putting financial obstacles in the way. Furthermore this could save the NHS billions of pounds in the treatment of a totally unnecessary infection.

Dr Ahmad talked about much more than we could ever cover in this newsletter. I would encourage you all to come and listen to her when she comes to speak to us again.

NATIONAL CONFERENCE
You will recall from the last newsletter that we would very much like to meet you all and get your views at a national conference. We have now set the date for this as SATURDAY 22nd NOVEMBER. The venue will be the church hall of St Catherine, Bristol Street, Birmingham 5. We realise that for some of you the distance involved will be great but I ask you to come if you can. We will provide refreshments and hope that it will be a most enjoyable day. We on the committee are certainly looking forward to it. An agenda is set out on the separate sheet with this newsletter.

TALKS AND FUTURE EVENTS
We would like your views on the shape of future events. Certainly when talking to many of you in different parts of the country it is clear that we should bring the talks closer to you. We would be pleased to help in any way if you would like a speaker or an event put on in your area. Please give either Anne or myself a ring to discuss.

Our next Midland based talk will be about Homeopathy. We know this is controversial but it may help some sufferers and we think it is worth looking into. We are trying to arrange a date for this in January. Further details will be in the next newsletter.

CHARITY STATUS
In a past newsletter we mentioned that at our meeting with the Patients Association we had been advised to apply for charity status, as this would give us certain advantages with potential tax implications vis-à-vis fund raising etc. However, speaking to some of our members the consensus seems to be YES, but not yet. Because along with the advantages comes bureaucracy and at present we do not have sufficient funds to warrant such a move. However we are putting this out for discussion and we would like your views. Please, if you cannot get to the conference let us know, as we can put your opinion to the meeting.

SPONSORSHIP
We are still looking for a company or organisation to fund the production of our booklet, as we would much prefer to give it away rather than charge for it. If you can think of any company with a compatible interest please let us know. Our objective is to get the booklet into the hands of every potential patient and visitor to our hospitals. We need your help on this one.

THOUGHTS
Perhaps we could spare a thought for Oliver Barker from North Wales. Early this year Oliver, who is only 20, suffered a serious accident with a tractor and was taken to the nearest A&E Hospital. During the operations he caught MRSA and is now in the Orthopaedic Hospital in Gobowen where he has had to have all the metalwork removed from his thigh and hip and now must wait while they determine whether the infection has cleared before any further surgery is done. They are hoping to get him home before Christmas, but it's a long haul being kept in isolation for the duration.

Also, our condolences to Mrs Doris Hope who recently lost her sister to Septicemia/MRSA.

FINALLY
Once again can I thank you all for your support. Anne, Trevor, John, and myself really appreciate your kind comments.

Tony Field
tony.field@mrsasupport.co.uk

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Click here to view July 2003 August 2003 Newsletter

OCTOBER 2003 NEWSLETTER

Dear Member

We have lots to tell you this month! And it all started with the BBC programme 'Intensive scares'. We had many calls referred to us directly, and from the Patients Association. As a result of this and other publicity our membership has grown from twenty five at the beginning of September to over seventy.

I must ask you to forgive me for the lateness of this newsletter and tell you that I have had very frustrating problems with my computer. For some time now a pop up message has been appearing at random intervals telling me that "the programme has performed an illegal operation and will be closed down." The screen has then locked and the only recourse has been to switch off and on again, with the consequent loss of unsaved work. It came to a head when it refused to connect to the internet and of course the email box. This proved to be very frustrating as it happened just after the article in the Observer. Which was closely followed by the interviews on Breakfast Television and Radio 2. So to all of you who didn't get an immediate reply to you 'e' communication I ask for your understanding and patience!

DIET AND MRSA
The talk by Christine Baker last month, at the St Laurence Pastoral Centre, was very interesting. She started by outlining some rather startling statistics:-
40% of patients admitted to hospital were malnourished, and of those, two thirds on reassessment on discharge had lost weight. This confirms the figures of the item we sent out with the last newsletter, taken from the Patients Association VOICE newsletter.

The reasons for this were many, such as long periods of unconsciousness, inability to swallow and (not mentioned) the questionable 'palatableness' of the food. All of this contributes to the advance of MRSA as with malnutrition the immune system is not functioning to its best, this is what the bug likes, and if present, given the chance, will overwhelm the bodies defences. With the right diet our immune system can deal with the bug, usually in short order. So the aim must be a good balanced diet with plenty of fresh fruit and vegetables.

MRSA AND THE VACCINE!
Our next talk is scheduled for October the 18th. When Dr Afshan Ahmed will tell us about the progress that she and Dr Skinner are making with the development trials. One of our members John Williams has had first hand experience of this and found that it was very beneficial. Go to the events page for the details of the date, time and venue.

YOUR CONTRIBUTIONS AND LETTERS
We would welcome any contribution you would wish to make to the newsletter, and within the budget we could certainly make one side of A4 over to a letters page. We have received some very poignant and moving letters with some of your membership forms and we shall be in touch with you to ask if we could publish them. Meantime, if you have a burning issue you would like to share, please write in. We will do our best to publish it without editing.

BLOOD TRANSFUSION HISTORY
Thanks to Francis Diggins who contacted me after the Observer article. I was able to visit the Institute of Biomedical Science stand at the Medical Equipment Exhibition in the Birmingham International Convention Centre.

The stand carried exhibits from the earliest experiments in transfusing blood. One which I found really surprising was by Sir Christopher Wren, better known for his other occupation as an architect, this was in 1657! The history was followed chronologically to the present day. One of the major milestones was in 1828 when James Blundell reported his results of injecting human blood using a syringe. Subsequently he devised an apparatus consisting of a funnel and a pump. This became known as Blundell's Impellor.

In 1901 Karl Landsteiner is credited with the classification of blood groups, but he only described three - A, B and O.

It was the onset of the Great War that accelerated progress and by the Second World War there was a high degree of sophistication, but a lot more work was done by Robert Race and Ruth Sanger, in 1950 they published "Blood Groups in Man." A work which became the standard reference on the subject for many decades.

On seeing some of the equipment from the 1950's with its ornate stainless steel canulas and rubber tubing; I was reminded by Brenda, my guide, that after each transfusion the equipment had to be washed and sterilised as it was reusable from one patient to another. When one considers that the level of cross infection from this equipment was very low at that time, it must be concluded that the nursing staff were more thorough than some of their successors today. Altogether a fascinating afternoon which would have held me longer but for the onset of the Birmingham rush hour which I wanted to avoid. I have a book from the exhibition if anyone would like to see it please contact me, it is a fascinating read.

MANUKA HONEY
A letter from one of our new members reminded me of the reports I've read about the benefits of Manuka Honey and its healing effects with MRSA. I hope to do a full feature on this in a future newsletter.

A GOOD READ!
"Spontaneous Healing" by Andrew Weil MD discusses alternatives to standard western medicine and touches on the overuse of antibiotics. A very readable book with some very salient points. The last time I looked it was available on the Amazon website.

NATIONAL CONFERENCE
As founder members of MRSA SUPPORT Anne Johnstone, Trevor Ray, John Williams and myself have discussed briefly the future of the group in view of the rapid and massive increase in membership. We would like to meet as many of you as possible and get your views on ways forward and any other objectives you may feel we should be aiming for. We envisage either a Saturday or Sunday starting at possibly 11.30am towards the end of November, in the midland area. This would be central for all and would allow reasonable travelling time for those members who live the furthest away. Dare I ask you to email me? (my computer should be put right very soon) or phone Anne or myself with your comments.

COMPILATIONS
We are asked now seemingly quite regularly for statistics and accounts by the media, of what they call case studies. If you feel that you would be happy to write down your experience and send it to us for possible future publication, then we will collate the case similarities. This will give us a clearer picture of where the worst areas are and certainly will pinpoint the hospitals which need to give special attention to their Infection Control. The problem with the government's way of allocating the star rating is that it includes an assessment of parking facilities. So a hospital can get a three star rating and still have a poor infection control record just because it has an accessible car park. I think we all know what we can do without!

THANKS
Finally can we thank all of you who have joined us, and for the very kind donations to the cause. Having healthy funds helps enormously in this very important move to change attitudes in our hospitals.

Tony Field
tony.field@mrsasupport.co.uk

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Click here to view the July 2003 Newsletter

AUGUST 2003 NEWSLETTER
Dear Member

There is quite a lot to tell you this month, and probably the best place to start with is the Patients Association, as this is possibly the most important meeting we have had.

Anne Johnstone, Barbara my wife, and I travelled to Harrow to meet Simon Williams who is Director of Policy at the Patients Association. We discussed various ways forward for MRSA SUPPORT with him. He recommended us to apply for charity status as a first step. This will give us certain advantages when raising funds and also further our credibility with established authorities like local councils and will enable us to apply to the Lottery Fund for future projects.

For our booklet "MRSA - A PATIENT'S DEFENCE!", he recommended that we look for a sponsor. This would enable us to produce it in large enough quantities to issue free to doctors surgeries and hospital waiting rooms. So we are now actively seeking a sponsor! If you know of a company with a compatible interest who you think may want to take part in this project please let us know.

While we are on the subject of our booklet; we plan to launch it in September with as much publicity as we can get. This will show potential sponsors that we can give them the right exposure to make their investment worthwhile. Meantime, a pre-production copy is enclosed for you to see before it goes on general sale.*

SKY NEWS
Some of you may have seen the item on the lunchtime edition of Sky news on Saturday 2nd August. Forgive me for being cynical, but it seems that when there is a lack of sensational news, such as a certain footballer's hairstyle, the media falls back on things like the health service and any other scares they can think of to fill a time slot, but ignore what are very important subjects such as this.
However, on the Friday I was called by Simon Williams of the Patients Association. He asked me if I could do an interview for Sky News about MRSA. If so they would be in touch with me!

The phone call duly came and it was arranged for them to do a live interview on the Saturday. The camera crew turned up about 45 minutes before the item was due on the news programme. Within 20 minutes I was talking to the producer from my garden. Then, on cue, after they had spoken to another sufferer they came to me with just three questions. I answered as briefly as I could and then the interview was over. Just like that!

But I did manage to get a mention in about the booklet. Sky news has promised me a tape of the item but to date it hasn't arrived.

FUTURE EVENTS
We now have a firm date for the rearranged talk about Diet and MRSA by Christine Baker MSc SRD. You will recall that this was to be given in May, but due to a road accident Christine couldn't get to the meeting. It is now scheduled for Saturday 13th September at St. Laurence Pastoral Centre from 2.00pm to 4.00pm.

Christine is a State Registered Dietician and advises on food allergies, obesity, diabetes and other diet related problems. I know from my own experience, and the stories I have heard from others, that diet is a neglected subject and yet it is crucially important with regard to MRSA. I think this is a talk we can all look forward to with great interest. What we need now is a good turnout. I hope you can all get to Northfield on the day!

WEBSITE
For those with access to the internet our website is now up and running.
The URL is www.mrsasupport.co.uk
Our email address is info@mrsasupport.co.uk
We have to say a big thank you to Callum Buck, a good friend of mine, for setting up the site. I'm sure you will all agree it is very professional looking.

Finally, you will see attached an article which we have taken from the Patients Association magazine about malnutrition.* We thought it was rather appropriate in view of our next event!

Thank you all for your support.

Tony Field
tony.field@mrsasupport.co.uk

* Enclosures and attachments are available to members (along with the Newsletter) in hard copy.

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JULY 2003 NEWSLETTER
This newsletter is once again belated, and I hope you will bear with me as I have a lot of catching up to do with other areas. Much of my time has been taken up with the booklet which some of you have seen in draft form. I am waiting now for it to be checked over by the experts and then we can decide what to do with it.

THE DIET TALK
This unfortunately did not happen because Mr Baker phoned me a short time before Christine was due to arrive, to tell me that due to an accident she couldn't make it. She was badly shaken and went to hospital for a check up, she has since recovered OK and has been in touch with me and we have agreed to rearrange the talk for some time in September.

We had 14 of us turn out, so Anne Johnstone and myself did an impromptu presentation about MRSA SUPPORT and what we hoped to achieve for the future, as a result we gained 4 new members and sold some of Anne's pictures to help the funds along. We now have the bank account opened and I believe £42.50. This will enable us to produce approx two future newsletters, but we are expecting to get more income from other sources in the very near future. We will keep you informed!

I have now received a bottle of QUAT PHEN cleaning fluid. If you recall I mentioned this in the last newsletter and how it continues to work on surfaces for 7days after it has dried. Also when used in the wash it builds into the fabric a very effective bactericidal treatment. This means that if used on the curtains around the beds in hospitals, these along with all the other surfaces in the wards would no longer be potential transfer sites for MRSA. Or indeed any other infection which is transferred by contact. This is a very clever cleaning fluid, and the inventor, Trevor Woollard, deserves our support in demanding that all hospitals should use it.

We are now in contact with the Patients Association. They are proving to be enormously helpful in supporting the development of our group. We have been advised by them to apply for charity status. Anne and myself will look into this when we have finalised on the booklet. We shall be visiting their offices for discussions on any further help they can give. As a result of a promise of a donation we as an organisation will join the association on a group membership basis at a cost of £50.00 per year. This means we shall get their newsletters and have access to information from them. They will refer anyone looking for information about MRSA to ourselves.

From September onwards we shall be organising four major events. The first as stated will be the rearranged talk Diet and MRSA with Christine Baker. Then, to be arranged, Dr Ahmed will come and update us on progress with the vaccine. Noreen Lopez has promised to return for another talk on Herbal Medicine and I'm looking for someone to talk about Homeopathy. Early in December we may be able to get all our speakers together for a 'Forum' type event for questions and answers. If any one has any ideas for talks or events please let me know and we will be delighted to include it in next years list.

A PATIENTS DEFENCE
This booklet which I have mentioned earlier has received much praise from both Dr Ahmed and the director of the patients association. We are looking for this to generate our main income for the future, but as members of the group you will receive a pre-production copy free of charge. We think that the initial batch will retail at around 50p each. Subsequent runs will bring the price down in proportion to the quantity.

To help the funds along we are selling a range of pictures of railway steam engines and classic cars. We will make up a separate sheet of illustrations to send out with future newsletters.

Well that's about all for now. Thanks for your support.

Tony Field
tony.field@mrsasupport.co.uk

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