BSR Annual Meeting Glasgow May 2009
Jean Miller of Tayside PMR & GCA Support attended the 2009 BSR Annual Meeting in Glasgow on 8/5/09 on behalf of PMR-GCA UK. Jean gave a speech about our new charity PMR-GCA UK. Read her speech below:-
Rheumatology Departmental Meeting
9 May 2008
Good afternoon ladies and gentlemen
I am happy to be here to tell you about the new national organisation, Polymyalgia Rheumatica and Giant Cell Arteritis UK to be referred to as PMR-GCA UK and also to give you an alternative view of PMR & GCA – that of the patient.
INTRODUCTION
How did PMR-GCA UK come about? In March 2008 Professor Dasgupta convened a meeting of representatives from PMR-GCA Support East Anglia, Tayside PMR & GCA Support which I set up, the Southend/Essex PMR/GCA Group and also from PMR Fighters a group of 5 who were trying to do something about the neglect of these conditions who have now set up 5 support groups in various stages of development. At the meeting we formed a working group to set up a National Organisation. Last September Polymyalgia Rheumatica and Giant Cell Arteritis UK was established, became a registered Company in December 2008 and a registered charity on March 20th 2009.
Why do we need a national organisation? Many who are severely affected need support, they want information, they want to know whether there is any research being done, they also want to raise awareness, and because many feel very powerless in the grip of these conditions a national voice will help to address their concerns.
The first shock the patient gets is being told they have PMR or GCA or both because most have never heard of them. I was diagnosed 8 years ago in France by a consultant physician called Dr Claire Guglielmenotti, even the French couldn’t get their tongues round that one. I’ll leave you to imagine the shock I got when told I had Pseudo-polyartrite Rhizomélique and also La Maladie de Horton. I still had the presence of mind to ask her what I could drink whereupon she launched into a lengthy discourse on the merits or demerits of various mineral waters. I eventually got a word in and asked, “What about a glass of wine?” to be met with a stare of incomprehension and the reply, “But, of course.” I then asked, “What about a glass of pastis?” and got the same response although she did qualify it with, but not too many. No Dr in the south of France would dream of advising no apéritif or no wine with a meal.The second shock is that you don’t get better next week. Many people who are not severely affected get by without their lives being disrupted too much but for those who are severely affected it can be a living hell, and for their spouses my husband added.
SUPPORT
The various existing Support Groups all function in different ways due to the geographical situation and the people who run them. Most seem to have 2 or 3 meetings a year with a speaker which is probably the best way where there is not a dense population. I am based in Dundee, a city, and we meet every month with 2 or 3 speakers a year. The members are so delighted to find others who understand. So we listen to each other, learn from each other and encourage each other. The value of these meetings is learning how others cope with the physical difficulties and the ups and downs of a LTMC.
The problem with PMR & GCA is that under our current appointment system there is no time to discuss the enormous variety of problems experienced with these conditions, due to the lack of a regular or predictable pattern, which is a major characteristic of most LTMCs. Support groups are not set up in opposition to medical care but do have a complimentary role to play. People can discuss their worries and concerns and so save visits to the surgery and cut NHS costs.
I spent 4 frustrating years searching on line for support and help. There was plenty of medical information but no support sites. Our Group got Lottery Money to set up a website which we did in March 2008. The website is a support site not a medical site. In the first year we had more than 3,000 unique visits from all over the world. And the gratitude from the site visitors has been overwhelming. The Royal National Institute for the Blind was so pleased to hear about our support site, were very encouraging and plan to put our website details on their page about GCA.
PMR-GCA UK will be able to coordinate and encourage the work of individual support groups and suggest where people can find help.]
INFORMATION
People want information about the conditions. Arc has been very helpful in providing information and encouragement and we get a lot of referrals from arc and Arthritis Care. Our Group send out an information package which people can read at their leisure and pick out what is relevant to their situation. Many of our group have multiple LTMCs. Arthritis Care and the ME Society run courses for anyone with any LTMC in Scotland, they also have pain seminars and in England there is the Expert Patients’ programme. These courses are excellent and teach you how to set targets within your limitations, take control of your condition and not let the condition control you. The ones in Scotland are run by people who have a LTMC and they are extremely well trained. The Pain Association also has regular meetings in various parts of the country quite separate from hospital pain clinics. Several of our group have attended these courses and found them very beneficial
Again PMR-GCA UK will be able to supply up to date medical and non medical information to support groups and on their website.
RESEARCH
When I first took ill with PMR & GCA it was almost impossible to find information about research and people want to know how much if any research is being done into these shockingly neglected conditions. The neglect is all the more shocking because, as you know, PMR is the most common inflammatory disease in the elderly and with the average age of the population rising, the incidence will likely increase. With GCA it’s much more serious as 1 in 5 lose partial or complete vision because of misdiagnosis which is why the first task of PMR-GCA UK was to bring out a leaflet on GCA like the one arc has on PMR.
PMR-GCA UK has already had a £50,000 donation from a Charitable Trust towards research and setting up the organisation. We need to promote research to find the cause of and we hope a cure for PMR & GCA. We also need to find a treatment that is effective, without the serious side effects of prednisolone or methotrexate. PMR- GCA UK is actively selecting a project at this moment and has plans for further fundraising.
RAISING AWARENESS
Raising awareness of PMR & GCA is so important in both the medical profession and the general public. You all know about these conditions but some GPs are not well informed and they are on the front line. I hear tales of excellent GP care and also some horrific tales of misdiagnosis up to consultant level. (Muriel, Don, woman in Inverness, Bob Forsyth, Monica). I can give examples of unnecessary use of NHS resources in unnecessary and sometimes dangerous treatment. (cough/antibiotics aparoscopy, cafergot). I know some rheumatology departments have training seminars for GPs but there seems to be a gap somewhere resulting in a great lack of awareness among some GPs and consultants in other medical disciplines, especially with GCA. I sometimes think GCA is a rare disease because it is rarely diagnosed. I know it’s not easy to diagnose but this surely indicates that more must be done in educating health professionals. PMR-GCA UK can only do this with your cooperation.
We need to raise awareness in the general public so that they understand why their friends and relatives who look well can’t function normally. But more importantly in the workplace. Many other LTMCs are looked at sympathetically, with understanding and recognised officially as disabling. PMR and GCA must be recognised as LTMCs causing disability with the relevant job safeguards and benefits etc. and PMR-GCA UK will work towards this end.
PATIENT CONCERNS
It can be easy for medical practitioners to treat the condition and miss the issues which are significant to the patient. For those severely affected these conditions can be disabling, confusing and lonely to live with and can affect every aspect of life, not only physically but mentally and spiritually too. Some experience increasing isolation as their health deteriorates and their life goes on hold along with the lack of understanding of their friends and family so coping is a serious concern. Pain, unreasonable fatigue and a lack of stamina are the major problems. And to be told you have mental health problems or to be met with a glassy stare of incomprehension or scepticism is not helpful when you are struggling to come to terms with these illnesses. All that is needed is a kind word.
The effect on your life and the rest of the family can be considerable and even devastating. The hardest thing for me was not being able to look after the grandchildren. My husband has had 4 life threatening illnesses in the past 5 years and I’m sure the state of my health was a contributory factor. The most serious effect for him was that he had to find the kitchen without a map, never mind finding the cooker. It’s very difficult for people who live on their own, they have to get out of bed, dress, cook, feed themselves, wash with no help. There are others who are the carers of a spouse with Alzheimer’s or of a disabled child. How do they manage? It’s like living in a dense physical and mental fog wearing extremely heavy boots and it just goes on and on and on.
For some the concern is misdiagnosis, and the length of time taken to reach a correct diagnosis, even for as long as 2 years with the consequence of unnecessary suffering and treatment. The lack of knowledge in some Health Professionals has caused concern. With GCA, alarm at the possibility of blindness is a concern. I just worried about how I would see the worm holes when preparing carrots.
The dramatic relief experienced with prednisolone doesn’t prepare one for the ensuing side effects, the difficulties of the reduction programme and the setbacks for which some patients are given no information. The fearful weight gain can be very distressing and demoralising. I didn’t put on weight but my wrinkles did fill out rather nicely.
Some would like to have been told to modify their lifestyle within the limitations of the condition instead of being told to carry on as normal and it would all be over in 2 years. A more realistic view of the progress of the illness would have been more helpful. Some have experienced distress during hospital stays for other conditions with no understanding of the difficulties of getting in and out of bed and passing out after being given prednisolone on an empty stomach, plaster ripping off skin etc. PMR-GCA UK will provide a national voice to address these concerns.
CONCLUSION
There are a lot of positive aspects in having a LTMC. It is well nigh impossible to go through a long term illness without learning something. For some it is a very steep learning curve in just getting through each day. I am grateful for this illness. I have learned such a lot over the past 8 years. It’s been a humbling experience coming to terms with the limitations of the condition and setting up the support group has been very therapeutic.
My message to you is to raise awareness in medical disciplines other than rheumatology and in teaching medical students, so that no physician prescribes cafergot for undiagnosed GCA, no surgeon performs an unnecessary laparoscopy for severe pelvic pain on a patient with diagnosed PMR & GCA and GCA patients don’t lose vision because the GP says they have been grinding their teeth in their sleep. It would be helpful if you encouraged support groups and self-management courses as they can cut down visits to the HPs and reduce pressure on the NHS. They are not impinging on your territory.
PMR-GCA UK hopes to improve the care, management and treatment of PMR & GCA by working with HPs and those who are experiencing these conditions. We have on the board a rheumatologist, an MP, 4 people with PMR and Professor Dasgupta as our Honorary President. We would like more directors with medical expertise and would be very grateful if you or you know of anyone who would be willing. It would be a great opportunity for a recently retired rheumatologist who would have the knowledge and also the time to give to the organisation.
I have cards for my group with the website details but unfortunately PMR-GCA UK does not yet have cards.
