What happens at the Clinic

More from Dr. Beckett 1997 account about the Connah's Quay ME Clinic. Unfortunately he is no longer working at the clinic and the clinic does not currently have a GP in it's team.

Your first visit to the clinic

Stuart Paynter, a Psychologist who works with the team, and myself (Dr. Beckett), sit down with you for approximately an hour, listen to their story and have a look at the GP’s referral letter. There are some questions associated with the process - these were set up because we were asked to validate and justify our existence in Wales. The team was set up as a Pilot study and has been monitored by a research organisation in Bangor College. The idea wasn’t to do primary research of the cause of ME, it was to say whether the service was working, whether people were satisfied with it and were benefiting.

Assessment

The first aim of the assessment is to validate the patients, and say "Right you’ve got ME/CFS we believe you’ve got it and we are going to do something to help you."

So the second thing was to rule out any other cause of fatigue. I would say that the GP’s diagnostic ability has shown up as excellent. The quality of their referral letters has been very good. I have only seen 1 or 2 patients where a primary medical illness has been missed.

Depression

We are also looking for evidence of severe depression, we know that patients with ME naturally get mental and physical symptoms, they get depressed, they are not able to function, if you think you have a severe primary depression that needs to be treated, we communicate that to the GP, and the local mental health team will help them, until they feel they are at the point where they can join one of the groups. So it is partly a back-up screening process - and it is also to introduce ourselves and tell patients what we are going to do and what we can offer and give them a chance to say `Yes we would like to try this approach to our illness` or `No we wouldn’t`. We have no criteria to rule out people from the groups, it is up to the people themselves whether they are mobile enough to get into the group sessions, this limits some people out of the community and they are just not well enough to come in, but with our limited resources there is nothing we can do at the present moment. We finish off by giving some facts about ME for the patients to take home until we can see them.

Multi-disciplinary Group Meetings

Patients are then invited to what we call Multi disciplinary group meetings. In the groups we found that the number of patients that we can see and talk to is limited to about 10 at the maximum. We invite 10 people but we expect 2-3 to drop out. Most of the groups have been 6-8.Some people drop out because they get better, some people drop out because they find it is a very considerable commitment, and I would say to everybody who has attended the groups, we realise it has been very hard for some of them and they have shown great commitment. We offer them 8 constructive 2 hour sessions and we have arranged it for a Friday morning from 10am. That is all we can do in terms of our own schedules, there are GP’s, psychologist, dieticians and physiotherapists, this was set up because we feel all chronic illnesses have got separate components and one person working alone can never give as good a service as 4 people working together.

Aim to Hasten Recovery

Our aim is to hasten recovery we’ve worked on a fairly individual basis within the group setting, we’ve tried to go through all sorts of problems that have occurred to individuals, and we’ve tended to not have a rigid structure, each group we’ve seen has had a slightly different problem. Some people have had more concern about pain, others have had more concern about sleep, and we’ve tried to adapt to the patient we are treating and dealing with. The groups have been very enjoyable for us actually and we’ve enjoyed seeing the patients, but it is certainly not a rigid approach we use. It is really a matter of the team and the group working out what priorities there are in the first couple of meetings. We haven’t used one particular type of treatment and haven’t assumed that ME has been caused by one specific factor.

Holistic Approach

We have taken a very holistic approach, all diseases are mind and body and to split between them in this century is really out-moded.We are not saying to people `This is in your mind, this is in your body` We are saying `This is an illness YOU have as an individual`.

The spectrum we cover is very broad, how to cope with your relationships, how to deal with relapses, how to pace yourself, how to try and smooth out the illness, and how to take the resources that your body has and turn it towards healing. How to get out of a vicious circle of Chronic Fatigue, tiredness, pain, frustration and broken relationships.

Disease of Isolation

This is a disease that isolates people, they are not able to get around and start to lose their network of friends.and support. Their relationship with their partner changes. We try to deal with all these things on both a group and an individual basis.

All the members of the team try to have individual sessions with patients. I try within the group when we have a break of 15/20 minutes, after about 3 quarters of an hour. It gives us time to talk to people within the group and decide if they would like to see us on their own. If I`ve got a patient with high blood pressure they may be asking if that is causing fatigue, obviously its worth their while sitting down with me and if necessary writing to their GP`s, suggesting there may be an alternative.

Energy Resources

We have looked at the basics of handling the illness and one of the major things is that people`s total energy resources are depleted by the illness. One of the things we have looked at is trying to maintain energy resources, but also where best to use your energy. How to maintain quality of life , and how to get something out of life even if you have such a chronic debilitating illness such as this, is important.

No Magic Cures, But! People Do get Better

So we are trying to marshal people`s inner resources to recover from this illness because we know that people can recover. We know that there are factors that hamper them, but the body is its own natural healer, so if we can help the body to heal and we can help the person to solve some of the problems of living with a chronic illness, this is what we are offering.

We are not offering any magic cures, because at the moment I do not think there is a magic cure.

Information

We are also offering information, the ability to ask us if some new supplement or treatment is on the market, is it worth having a go at it. It is important that unbiased advice is available.

There is a terrific amount of information on the Internet in terms of medical research. One of the databases showed 2,000 individual papers I skimmed 40/50 and that`s about the limit I could do. There is a great deal of information on the Internet, people are generally computer-literate and have access to it.

You get information overload and you do need to ask `Do you think this is worth trying, or am I blowing my money away`.

That is a quick overview of the approach we use. It doesn`t offer you any magic bullet or answers , but it does give you an idea of the type of service that we are offering.

The Health Authority has been very imaginative and the ME Clwyd Support Group has done excellent work in getting the service launched, so we do have something to offer you the patient, GP's and hospital consultants.

This article by Dr. Beckett was originally published in one of our newsletters.