"Management and care appalling at the Respiratory..."

About: Southmead Hospital

I had an appointment in May this year at the respiratory unit. I have hypersensitive Pneumonitis and was being treated with steriods. The consultant wanted to take me of the steriods because of there long term effects. However the drugs they wanted to change me to have far worse side effects. One drug they wanted to give me a Chemo drug with all its side effects. I said no . The consultant then suggested immunosuppressant drugs. These have a high cancer risk which include, skin cancer, lymphoma, leukaemia. I had already informed the consultant during the consultation that I was a high risk for breast,ovarian and bowel cancer due to family history and that had already been checked by the genetic team at Musgrove Park hospital.some years ago. I stated I was not happy with taking any drug that increases my chances of getting cancer. The consultant therefore arrange a meeting with a pharmacist to discuss the drugs. I found this meeting a waste of time. The over riding factor was that both consultant and pharmacist were determined I should take one of the drugs irrespective of my concerns. I had agreed with the consultant to a four week follow up appointment so that I could talk with my GP and my Neurologist about changing from steriods to the potentially cancer producing drugs. However to my shock the pharmacist send me a prescription through the post for an immunserpresnant drug. They completely over ruled what was discussed in consultation with the consultant. The pharmacist was not present during the consultation. This is I believe a dangerous act. The pharmacist sent details to my GP with full details of drug levels to prescribe and what weekly blood test I would need to check the drugs don't damage my kidneys or liver. This is shocking. I made my opionion clear over that situation. I did not receive my 4 week follow up appointment. I contacted the consultants secretary to ask why. Their reply was that it was not their problem. It took me a week with the help of the complaints team to get my appointment. I was accused of lying because they could find the paper work to support the appointment. I ask for a copy of my clinic letter after 5 weeks as I had not received one,only to be told that there is a serious back log of clinic letters ,clearly this goes back months. It has been agreed that I should not take the immunserpresnant drugs with my neurologist but to stay on the steriods because of the positive neurological effects, but to reduce to a maintance level. My neurologist also felt my concerns over the cancer risk were valid and supported my decision to refuse the immunserpresnant drugs. They took time to understand my family history unlike that of the respiratory consultant at Southmead. My experience with respiratory unit was appalling and still continues with on going failings. I have now taken my care away from Southmead. I don't trust them and they appear to work in chaos. They appear to give out drugs like smarties with very little consideration.

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Response from Southmead Hospital

Dear Anonymous – thank you for taking the time and trouble to post your views about your care on the NHS Choices website. We of course regret that any patient should feel they have not received good care.

Our records show that the Chief Executive has personally responded to all of the issues you raised above through the formal mechanism of our complaints process. In accordance with the specific invitation in the reply, if you remain unsatisfied with the response, please contact the Trust directly again and we would be very happy to consider how we can further assist you. I would like to reiterate the Chief Executive’s personal message added to the response by wishing you success with your continuing care.

Kind regards – Steve Sykes

Advice and Complaints Team

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