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Thoroughly Cheesed Off

I need a bit of a rant and can think of no better place to do it.

I was dx last May and for the first 8 months of my treatment I was extremely happy with the quality of treatment and service I was getting from my local hospital. My Dr was fantastic and made this troubling time much easier to deal with.

He retired at Christmas and has not yet been officially replaced. In the last 7 weeks I have had 3 trips to the hospital as I am having trouble with low blood counts and on each occassion I have seen a different locum.

Not only am I unable to develop a relationship with the new Dr's I am having trouble understanding some of them; the last one especially. I don't like to think of myself as a racist and believe these people are quite remarkable as English is not their first language, but when your treatment is not going as well as it could, you need to have confidence in your abiltiy to communicate with the specialists. This is something I don't have.

I am currenlty drafting a letter of complaint to the hospital and was wondering if there is anyone else out there in the same boat.

The hospital I am talking about is Bedford, the excellent Doctor that retired was Dr Howes.

I have spoken to my GP about transferring my treatment to another hospital but waiting lists are quite long and the hospitals I would consider are not available anyway.

Anyway rant over, I feel better now

Take Care

Helen

Hello Helen,
Loosing the doctor who has been treating you since diagnosis can be a real shock. This happened to me, but I used it as an opportunity to change hospitals. This did involve lots of travel,(200 mile round trip) but it was well worth it to get the best treatment I could find. I see either Dr Ho or Dr Visharka who are members of Professor Mufti's team at Kings College Hospital, London. From Bedford would you be able to travel into London to Hammersmith hospital? That is also a centre of excellence.

I agree that where possible, it is a good idea to see the same doctor on your visits and build up a good relationship with them. If this is not possible at the moment because of the use of locums you could seek out the specialist hematology/oncology nurse and ask them to help you with any difficulties.

Pennie

Interesting comments and I doubt you are alone- Val is seen by any one of several doctor's in the haemotology dept of the local hospital (at least 6 different doctors in the last 12 months).

Following the government's decision to make doctor's apply for their own jobs last year, we have also been seen by a number doctors we politely but firmly asked to see a Doctor who we knew was working and who Val had seen before.

In the main we cannot complain about our treatment, but the idea of the same doctor each visit seems far away in our area.

ps nothing wrong with a good rant!

Phil and Val Greenwood

Des

I live in Wales and was diagnosed in April 2003. After almost a year I requested a referral to Hammersmith as I felt(after reading on this site) that they were far more familiar with CML than my local Consultant haematologist, who sees all sorts of blood disorders.
It is the best thing I ever did. I now travel 4 times a year to HH - a round trip of almost 400 miles, I have my PCR taken which locally would only be taken once a year, and chat with Drs Marin, Apperley etc and feel 100% when leaving. They are so positive, not doom and gloom at all. I would recommend to any of you CMLers to try and get to a specialist hospital like HH. It is worth the effort, mentally as well as physically.

Des

Helen

I was sorry to hear of your problems at your local hospital. I would think that everyone here would empathise with you. There is nothing worse than the building up of anticipation and tension prior to an appointment and then coming away feeling less than satisfied. It must be really hard when your consultant retires, especially when you trusted him so much. I think everyone feels so much better when there is continuity of care plus good communication skills from the doctor. Whether you want the barest facts from your doctor or a discussion on holiday plans with the doctor practically putting his feet on the desk............it is whatever works for you (I get my best holiday destinations from my consultant!).

I work on the 'other side of the desk' as well as being a CML patient and I know how important it is to communicate well with my patients and I know that they always appreciate seeing the same person each time. They really like it when I remember things they have told me.

I think that you have done the correct thing in writing to the chief executive. It certainly can't hurt.

I don't know too much about waiting lists for haematology but I would have thought that with already diagnosed leukaemia the waiting lists shouldn't be too long. It certainly may be worth considering transferring to one of the bigger centres and the Royal Free or UCH may be accessible for you. There is certainly an iniative at the Royal Free whereby new patients are seen within a very few weeks.

I do hope that things work out for you.

regards

Susan
www.caringbridge.org/visit/susanleigh

Hi Helen,

You should be able to communicate with the person responsible for your well being.

My advice would be to ask for an immediate referral to somewhere like the Hammersmith which is a center of excellence for CML. There you would know you are getting the right treatment with the up to date knowledge that the consultants have in these centers.

Please act swiftly as you know letters can take some time to be prepared but don't give up. Keep pestering.

Good luck.

Steven D