RAIRDA calls for specialised centre within Wales

RAIRDA recently submitted evidence to the Welsh Government in response to their consultation on guidance for services for people with arthritis and long-term musculoskeletal conditions.

We told the Welsh Government that there is a clear need to improve care for people with RAIRDs in Wales. Evidence from our surveys indicates that patients in Wales, on average, have more problems with their care than those in the rest of the UK. Whilst there is some good care in Wales and some clinicians with specific expertise in RAIRDs, we believe the lack of a commissioned specialised centre in Wales is a major reason for this difference.

Current Issues in Wales

The figures outlined in this blog are taken from fresh analysis of a UK-wide survey of people with RAIRDs conducted in 2018, to which we received 2229 responses (125 from people in Wales) and from a new survey conducted in June 2021 of 126 patients living in Wales. In addition we’re extremely grateful to the small group of patients in Wales commented on our draft submission to the Welsh Government.

Read our full 2018 report here.

On average, patients in Wales report worse care than those in the rest of the UK

Our 2018 survey indicated that people with these condition in Wales, on average, have greater issues accessing care for their conditions than in the rest of the UK.

We found that:

  • In Wales 35% of respondents said they waited over 6 months to see a specialist when waiting for a diagnosis. In the rest of the UK the figure was 29%.
  • 27% of respondents in Wales said they had a coordinated plan in place for their care, compared to 40% across the rest of the UK.
  • 9% of respondents living in Wales reported they had been able to access care at a joint clinic with doctors from multiple different specialties compared to a, still low, 17% across the rest of the UK. This is despite the that fact 93% of UK survey respondents reported seeing clinicians from multiple specialties.
  • In Wales, 62% of respondents said they weren’t confident in their GP’s understanding of their condition, compared to 53% in the rest of the UK.
  • In Wales, 9% of respondents reported being offered psychological support to help them manage the impact of their condition on their mental health, compared to 15% in the rest of the UK.
  • Fewer respondents from Wales had a specialist nurse involved in their care, and of those that did, fewer found it easy to contact their nurse compared to the rest of the UK.
  • In addition, in Wales, 38% of patients said they had accessed private healthcare for their condition compared to 28% in the rest of the UK. This indicates less patients are able to get the care they need through the NHS.

Meanwhile, comments collected in our 2021 survey made clear how serious issues were in parts of Wales:

“Patients with chronic ill health are being failed in Wales. There is no support, no monitoring, no bloods taken, no medication. I worked hard in my career. For the past eleven years I have become incapacitated by my illness. I have lost my career and am now unable to afford private care.”

“My diagnosis 12 years ago took so long and was traumatic, I became so much worse than I needed to before diagnosis and treatment, this fear stays with me.”

“I have felt totally abandoned for the last 5 years since being diagnosed.”

“Having to fight the health board for minimal contact.”

“I’m often waiting for months despite appealing for help.”

Whilst some patients did report good, responsive, and coordinated care, comments like the above illustrate that many patients in Wales face serious issues.

Given the differences between the rest of the UK and Wales, there need to be specific proposals from the Welsh Government to improve outcomes for people with rare autoimmune rheumatic diseases.

Impact of COVID-19 pandemic on access to care

Our June 2021 survey asked patients what impact the pandemic had on the care they received:

  • 41% said it had a major negative impact
  • 29% said it had a minor negative impact

There were clear variations in how responsive services had been able to be, and some services had delivered good care despite the pressures of the pandemic. However, some very ill patients reported issues getting care.

“Whilst face to face appointments were swapped to telephone appointments during the pandemic when I had issues and new symptoms I was seen in clinic within the same week.”

“I had my rheumatology appointment cancelled during March 2020. I have not heard anything more from the hospital since. I am unwell and was hoping to start a new treatment for the conditions I’ve had diagnosed. I feel there is no help whatsoever and as if I have fallen off the radar completely. Just left in pain and forgotten about.”

“I went privately as I didn’t know who to contact during a flare. The consultant explained it will be due to COVID that the rheumatology nurses don’t answer the phone, or reply to messages left”

Rheumatology staffing issues affect RAIRD patients

Comments we received from patients in 2021 from patients provide further evidence of the extent of staffing issues in Wales. For example:

“The rheumatology department is vastly understaffed, and the waiting list for clinics are long. Therefore, conditions deteriorate and end up needing more intensive intervention, making the rheumatologists job much more difficult and burdening the waiting list more.

“My rheumatologist left the health board over 2 years ago and I have been left in limbo with care.”

Workforce issues have contributed to overstretched services and it’s evident to patients that healthcare professionals do not have the time to deliver the quality care they aim to.

Issues with access to specialist care in Wales

In Wales, patients may be referred onto another hospital in Wales for care where a consultant or team is understood to have additional expertise caring for a certain rare disease, or onto a specialised centre in England. However, doing this through the NHS is a difficult process and can require an individual patient funding request (IPFR) to be made by clinicians.

In their comments, respondents to our 2021 survey told us:

“I feel the Welsh NHS has abandoned me, I’m fortunate I can pay to access treatment and consultation in England, but there is a desperate need for a centre in Wales to treat patients like myself with specialist care”

“I was under the care of a health board outside of where I lived initially and as it was a specialist centre I had very good care. However, I’ve been repatriated to my local health board and since then the care I’ve had has been awful, in fact it’s been non-existent.”

Given the disparities between care in Wales and care in the rest of the UK, there is a clear need to improve access to specialist care for RAIRDs in Wales.

Key recommendations

We believe there is compelling evidence to support specific actions for patients with rare autoimmune rheumatic diseases.

A specialised, tertiary centre (or centres) for these conditions should be formally commissioned in Wales by the Welsh Health Specialised Services Committee.

Recognising that many people with these diseases cannot get all the care they need from their local hospital, other UK nations specifically commission certain hospitals to deliver specialised centres specifically for these diseases. Patients are referred to these centres by other clinicians in local hospitals and these centres have to meet certain criteria to qualify as specialised.

The Welsh Government can help close the gap between Wales and the rest of the UK by commissioning a specialised centre.

Some patients will continue to need care from hospitals in England – this is because there are some patients who need to see a clinician with further expertise than can exist in Wales. For example, some patients in the north of England travel to Cambridge for their care, despite there being a specialist centre in their region. However, a specialist centre is still needed to drive improvements in care in Wales.

A specialised network could further increase the impact of a new specialised centre

To effectively amplify the benefits of a specialised centre, we support the use of specialised networks to support local rheumatologists to care for these conditions when appropriate. These networks exist in other parts of the UK and often use video conferencing to allow clinicians to seek advice on treatment and make sure care is delivered consistently.

These networks function best when they are centred on a recognised specialised centre, which is properly funded to invest time into supporting the network.

Additional recommendations

Other recommendations in our response include:

  • Action on workforce development, education, and recruitment in rheumatology and investment in wider multidisciplinary teams including specialist nurses and clinical psychologists in line with the British Society of Rheumatology’s recent report ‘Rheumatology workforce: a crisis in numbers’.
  • Improve access to rapid advice through advice lines and department email inboxes.
  • Action to ensure face-to-face appointments when needed.
  • Specific recommendations to support rare autoimmune rheumatic diseases, rather than recommendations covering rare diseases in general.

We hope that the evidence provided in our response fosters a sense of urgency. Specific actions to improve care for rare autoimmune rheumatic diseases, and support clinicians to deliver this, need to be taken by the Welsh Government.

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