"Western Isles Rheumatology Service"

About: Western Isles Hospital / Rheumatology

(as the patient),

Around three years ago I was diagnosed with rheumatoid arthritis and have for some time not been at all happy with the inconsistent, untimely and generally very poor rheumatology service provided. This complaint relates to both the logistical and clinical care provided. The key points are outlined below:

1. Many cancelled and rearranged appointments. This appears somewhat hypocritical given the noise the health service makes regarding missed appointments by patients. I get the impression that appointments are sent to patients without actually having a planned rheumatology outpatient surgery. This looks like an exercise in performance reporting adjustment.

2. Patients seem to no longer actually see a consultant. I don’t have a problem with nurse practitioners, indeed they are very good, but in most cases they still have to report back to a consultant who always takes far too long to feedback treatment advice and medication changes to GP surgeries. In the meantime patients suffer.

3. Delays and cancellations simply lead to more appointments and pressure placed on the GP in the hope that a consultant can be prodded into dealing with serious RA issues. Again consultant’s responses are untimely and patients continue to suffer.

4. I have seen several different consultants, a different one at every appointment for quite some time. This has led to what is felt as an inconsistent treatment strategy. Indeed, at one point consultants had a difference of professional opinion over treatment. I was told an additional drug was going to be introduced and to have an eye test first. I duly did this and on my next meeting with a different consultant I was told, quite sniffily, that this wasn’t going to happen because she didn’t think it was needed. This was a waste of my time and money. Also at this point my medication was reduced.

5. Within a few weeks of medication reduction I experienced a serious recurrence of my RA that has endured now for over a year! Methotrexate dose has been steadily increased with no effect until recently when I was told to stop taking it because of a liver problem. The only respite I’ve had over the last twelve months is a stream of intramuscular steroid injections every few months. Most of these injections I’ve had to request from a GP myself out of desperation to get relief from pain and immobility so I can continue to work for a living.

6. At the moment I’ve just been put back on low dose methotrexate, a medication that has not worked for at least twelve months. A fact that the consultants seem to refuse to take on board. My last steroid injection has worn off and my RA is again at the point of painful immobility again. In the meantime there is silence from the consultants. I was to attend a nurse practitioner outpatient clinic this week but this has again been cancelled (twice now) and is not for another month (assuming this isn’t cancelled too). This forces me to make yet another GP appointment to try and deal with current issues.

7. Over the last twelve months I’ve gone from being absolutely fine to being forced to declare a disability at work and to start taking time off sick. It looks like I will have to take time off work again imminently when timely intervention may have avoided this.

In general terms I have been given the impression that rheumatology patients are an inconvenience to be dealt with by platitudes and one dimensional thinking rather than timely proactive involvement and coherent well planned care strategies. I feel the rheumatology service actually borders on patient neglect and at the very least provide an untimely and loose interpretation of NICE guidelines for the disease.

Publicly available information indicates that there have been issues with rheumatology services on the islands for a very long time. For far too long the stock platitude response to complaints is recognition of the issue and an assurance that you are working on options to deliver a solution. It really is time that NHS Western Isles actually came up with a tangible and effective service for rheumatoid disease sufferers.

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

Dear Epideme

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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