"Inadequate rheumatology service"

About: NHS Western Isles Western Isles Hospital / Rheumatology

(as the patient),

HHaving been referred to the NHS Western Isles Rheumatology Service by my GP I eventually had a brief 'curt' consultation in January 2015, it was agreed that I would be started on Methotrexate orally.

Whilst given a diagnosis of RA, the condition, its cause and effect was not described and I was not given any patient information on the disease, as quote: "the book shelf was out of material". Nor was there any medication leaflets on this amber drug given because again they had all been handed out that day. There was no signpost to reputable sites for me to look up my diagnosis. This resulted me taking to Google to understand a life long condition I have been diagnosed with. Whilst this is OK to do 'additional' research some primary information or at least professional websites could have been given, to save ambiguous and altogether non factual information found on the web which caused further stress and anxiety.

In accordance with the SIGN guidelines, it is recommended that the patient has bloods (LFTs, U&Es) done and a chest x-ray before starting MTX. The x-ray was not done despite my concerns voiced at the consultation of a SOB and chest pain.

Having felt some serious side effects over the weeks, I asked to see a member of rheumatology team on 3 occasions to discuss my condition and medication, and of which an additional written request was also made by the Occupational Therapy Dept on my behalf having heard my concerns. Unfortunately an appointment was not forthcoming then, nor has been. Over several months, with deterioration in my health, decreased well being and increased symptoms/pain I also asked the Department on 3 other occasions, to see a Consultant for an appointment (which was left as an 'open appointment'). I was told there were plenty of patients waiting before me and I would have to wait. I described my concern that the MTX was not working at week 10 and was told to give it the full 12 weeks and ring back. I went back to the GP who negotiated on my behalf to self inject MTX to save the side effects.

Having no accessible Rheumatology Service in the Western Isles and having messages from the patient, primary care and secondary care going through various admin, secretaries, via GPs and other secondary care services and AHPs) has led I believe to inconsistent communication, poor timely response and poor management plan of the medication and the disease. Ultimately this led to me becoming acutely unwell, resulting in a 999 call and emergency admission to WI hospital for over 7 days in April.

Having come off MTX which was finally agreed as not working as my inflammatory markers (whilst in hosp. the markers were elevated) and waiting for my LFT function to come back into a safe range (which they have never fully done), I have until recent weeks been in full flare since diagnosis Jan 2015.

I was finally seen in July +6 months following initial appointment and agreed a new medication to start. I was further asked why I had not been started on a parallel medication which would 'combined' would better treat the disease, as my blood results in January 2015 indicated an additional inflammatory arthritis, along with my patient symptoms suggestive of Lupus. I am concerned that the results reporting in January were 'undigested' or 'not acted upon' and had they been reviewed, I may have avoided an patient in-stay and significant on-going ill health if treated appropriately.

I have unfortunately had time off work, which I believe could have been avoidable, and now with further repeated tests which still is delaying effective management and treatment to date, I am concerned that this may impact me with a loss of earnings as per the organisations sickness policy.

I appreciate the staff in the team are swamped with work, and are trying their best, but NHS staff and patients need support and the NHS as an organisation should address this and ensure the Rheumatology Service is clinically safe and effective.

I appreciate the difficulties in delivering a service on a remote island with cost constraints, is exceptionally! difficult, and there are pressures on resources, budgets, staff time and the service all the time, with the additional complexities of SLAs, but I also believe that if the service cannot be delivered consistently and safely locally, then a clinical risk assessment should have been done and an alternative solution should have been sought to ensure patients receive the best and safest care possible.

A positive note, having changed GPs, and registered with 'Group' the GP cohort at the Group MP in Stornoway have been brilliant in monitoring my health and managing my condition, above and beyond the role of Primary Care due to the lack of Rheumatology Service provided by the NHS WI.

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Response from Denise Symington, PFPI Development Officer, NHS Western Isles We have made a change

Dear Penguin Walk

We are very sorry to hear about your experience with our Rheumatology Service which we acknowledge has fallen below the standards we would wish to achieve for our patients. We have been aware of the issues which you have highlighted with lack of continuity due to difficulties in recruitment and retention of staff.

We have been actively seeking a safe, sustainable and effective solution to the provision of healthcare to patients with rheumatological conditions. This has involved negotiation with several Health Boards in Scotland as well as looking at innovative solutions using telehealth.

Due to a national shortage of rheumatologists negotiations have been protracted however, we are fortunate in having reached a solution with a partnership with Greater Glasgow and Clyde NHS appointing a consultant rheumatologist who will act as the lead for NHSWI. In addition to regular visits to the Island we will also have access to a consultant Monday to Friday on a rota basis for advice. This will be available to GPs as well as the rheumatology nurse so will allow real time solutions for patient problems. All patients will be on a database that can be accessed by the staff in Glasgow so that accurate information including access to relevant results will be available at the time of decision making.

The new service will also provide monthly educational sessions for all staff as well as dedicated education for the rheumatology nurse and AHPs.

The new service is due to commence August 2015 and we are confident that this will provide a modern, reactive, evidence based solution for patients throughout NHS Western Isles (including Stornoway based clinics timed to allow patients from the Uists to be seen and return back home the same day).

Thank you for taking the time to contact us to tell us of your experience, we apologise sincerely for the issues that have affected our patients during this difficult time but are thankful we have now achieved a permanent solution. We hope that your future experience of this service reflects the improvements that we have sought to make.

Kind regards

Gordon Jamieson

Chief Executive

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