thanks to all my "specialists"

This time last year I was going thru a terrible time, my young son was dying of Leukaemia and I was travelling to Birmingham daily where he was a patient in the teen cancer unit. I have been diagnosed with Scleroderma for 14 years and have problems getting effective treatment locally so was told by Dr Denton at the Royal Free if I needed to see him contact the hospital and he would see me. From the stress I was under with my son 3 fingers on my left hand went black so I rang RF and also wrote but was told I would have to be referred by my GP. To cut a long story short my left hand was amputated at the wrist in July my lovely son passed away in November.

My local Rheumatologist told me my condition was not serious to warrant any new treatments and Iloprost does nothing for me, I have had it 13 times in the past.

Now I have no specialist. There is nobody I can trust anymore.

17 Replies

  • This is the most appalling thing I've read on here ever.

    I know right now you feel completely wronged and you have been. You need to try different avenues until you get through to someone you can trust because once you're there, you will feel so much better and safer and protected and safe. The stress you had I believe you still have. You have to look for other routes to get there - you know better than anyone it's you who will suffer if you don't.

    If I were you, I'd write directly to the dr at the free hospital and tell him what has happened. I'd also demand a referral from your GP to either the free hospital or Bath and travel. I have met the Bath team and they are exceptional and it's a specialist unit at the very front of care for SSc. You won't be dismissed.

    I know you know this: it is your life. Do not accept what you've been given.

    Please keep us informed how you get on. Xxxxx

  • Absolutely feel so sad for you. I really think you should highlight your appalling treatment for attention of professor Denton . I know it wont change what has happened to you but it will highlight things to the right people to ensure it doesnt happen again and hopefully give you at least some form of closure ...not maybe the best choice of words but I am sure you know what I mean. It is appalling and totally unacceptable. Let us know what.happens and all the best for the future x

  • Thank you so much for your reply xxx

  • You could always try to get transport to london.i used to pay someone to come with me to help.i found it very traumatic and took me a few days to recover. I have recently found out that I can get hospital non emergency transport. I have used it once and it made such a difference

  • Thank you so much for taking the time and trouble to comment on my post. I am still extremely stressed and probably shouldn't have wrote it. I have had good treatment in the past from the RF but owing to the distance and difficulty in using public transport it was decided by the medical staff that I would be best served in my local Rheumo unit although the Dr has limited knowledge of Scleroderma. I think I will contact the unit in Bath and try to get some transport. You are right about me needing to take control. I have been extremely depressed since my son passed away but I know he would want me to get the best care possible.

    Thanks again. xxxxx

  • Don't feel bad this is the place to offload everyone here has felt desperate. I don't think you'd find judgment here :)

    That's a great idea :) where do you live (roughly)? Good luck getting yourself sorted and seen and a huge hug from me xxxxxxxx look forward to hearing about your progress xxx

  • I will let you know the outcome and thank you for your concern and for taking the time to reply

    Suzy xxx

  • One of these moments in life when one feels like screaming.. I think you were vulnerable at that time and could not be more assertive.. I know how I felt when my friend's son committed suicide and my finger went black.

    I strongly advise you to contact Dr Denton by whatever means and let him know.. I can also recommend my consultant from Oxford, Dr Joel David. My deepest sympathy and a big hug..

  • Thank you so much xxx

  • I have been advised to try Oxford as it is slightly nearer to my home as I have to try to use public transport. Joel David has also been recommended so thank you so much for taking the time to contact me x

  • Dr David is a very fine consultant.. I hold him in very high esteem.. I flew to him from Spain where I live due to Reynaud's and he didn't even accept any fees because I had so much expense to get there and stay in a hotel.. he is very sympathetic..

    All the best.. you totally broke my heart...

  • I am so sorry if I upset you . I also hold him in esteem but feel let down by the medical profession as a whole not any particular doctor

    Suzy x

  • I discovered that doctors act in their own interest not necessarily in the interest of the patient. There are exceptions of course. My close relative is a surgeon in a private clinic and he tells me how he has to "meet targets" and make moral choices , juggle his ethics with the demands of his employer, and how it makes him sick.

    What has become common practice now, is that doctors prescribe meds they get commission for.. Patients still subconsciously expect doctors to be selfless and committed to patient wellbeing, while they are turning into businessmen!

    I am not sure who is to blame and how to regulate it. My other relative, who is a prof of urology and teaches in medical schools, says, he encounters young ambitious students who don't want to follow seniors or conventional methods,becasue they dream of their own illustrious "career",which may put patients at risk. He sarcasticly asked one of them if he wanted to have his own private cemetary. Still, I hope you will find the right doc to look after you. I can only encourage you to see Dr David asap.

    Best wishes.. and let me know how you are doing.


  • I am so sorry for you. Please phone the Royal Free and speak to Prof Denton's secretay. If he said he will see you i believe he will. Take care.

  • I am so shocked and so sad about what happened to you. I am sure Prof. Denton would be keenly interested in events too. Your story is disconcerting for all of us. I have always been a little unclear about the effect of stress on the development of Scleroderma. I know I am always reading ' try to avoid stress' but imagine this applies to almost all auto immune diseases. Due to my lack of knowledge and conflicting articles I have read I am unsure if stress plays an equal part to cold temperatures in making Raynaud's worse. I would welcome advice on this. if I have a stressful day or event I generally suffer with fatigue for a day or so, can do very little but 'mope around' and sleep. The fatigue takes a day or so to kick in. I have learnt to know when to expect it and believe me have tried most things to try to alleviate it. This aside I can't begin to imagine your pain. The wheels of the N.H.S. under this Government seem to be running a lot slower, eg longer periods between clinics/hospital appointments therefore it is often the case to be vigilant in spotting changes to our condition. Sometimes it is feels like a huge effort to seek help and I know in the past I have often buried my head and just hopes symptoms will pass. Most areas of the U.K are covered by a specialist nurse help line which is useful and they do a great job.

    I am not a medical negligence lawyer but perhaps you should take advice. The fact that you were going through such a personal trauma perhaps should have been ' flagged up' if your local Rheumy Doc was aware of this. When you feel able please take advice on any extra benefits you may now be entitled to. I am certain the C.A.B. will assist you. Don't be put off by forms/tribunals, again you can get help with these.

  • Thank you so much for your reply although we are all different I find stress has huge effects on me and how to avoid it?

    Suzy x

  • Thank you so much for your reply. I have probably spent too long licking my wounds so to speak and burying my head as I have been so depressed since losing my lovely caring son at only 23.

    He, however, would be first to tell me to get it together and find some help and I know I have to.

    My GP is at long last prepared to help with some grief counselling so hopefully I will begin to move forwards

    Thanks again for your help, caring and extremely useful suggestions x

You may also like...