The state of play in Wales

[Kevin53]

Lack of NHS resources in Wales causing delays to inflammatory arthritis diagnosis and treatment

State of Play Wales report

Rheumatology and arthritis societies raise concerns for arthritis services in Wales and call for more support to improve long-term patient outcomes.

The number of patients referred to rheumatology departments in Wales has increased by 66% since 2012, but resources for treatment are not keeping up with the demand, say patients and clinicians. As a consequence, new patients are waiting longer to be seen and treated and existing patients are struggling to secure follow up appointments and self-management advice.

These findings are important as there are 25,000 people with rheumatoid arthritis (RA) in Wales, and 12% of the adult population in Wales identify themselves to have some form of arthritis. This is similar to the number of people identified as having a mental illness (13%) and higher than those with diabetes (7%).

The findings are taken from a new joint report from the British Society for Rheumatology (BSR) and the National Rheumatoid Arthritis Society (NRAS) Rheumatology in Wales: The State of Play which is released today. The report is part of a series of reports that investigate how rheumatology services in the UK are being delivered.

Specifically focusing on services for newly diagnosed patients, the report identified that:

The number of patients receiving a rheumatology appointment within 6 weeks of GP referral has declined over the last year to just 39% as of June 2016.

Just 22% of patients in Wales with RA in 2016 were being seen within three weeks, compared to the national average of 37%*

Wales has the lowest number of Early Inflammatory Arthritis (EIA) Clinics compounding the service delays.

Wales is the best performing region of the UK for GP referrals, with 46% of newly diagnosed RA patients being referred within 3 days* of first presentation, compared to the UK average of 20%.

RA patients already within the system also face problems, including:

40% reported that intervals between appointments were too long to keep their condition under control, and 35% found it difficult or very difficult to get an appointment with their consultant.

Only 52% of patients in Wales received education and self-management for RA within one month of diagnosis, compared to a national average of 67%.

35% of NRAS’ survey respondents stated they were not given information on services or organisations who could give them further support, and 30% indicated nobody had spoken to them about the emotional impact of their condition.

Early diagnosis, treatment and management of inflammatory arthritis conditions is crucial to avoiding long-term damage and disability, both of which commonly lead to unemployment and further burden on health and welfare support services.

Peter Lanyon, BSR President, commented:

“Both feedback from our membership, the NRAS survey and the National Clinical Audit indicate variation in care across Wales for people living with inflammatory arthritis. We hope that this report should stimulate action across Wales to provide rheumatology services, and the professionals working within them, with the support they require to deliver consistently high quality care to their patients with rheumatic and musculoskeletal disorders.”

Rich Flowerdew, Welsh Ambassador for NRAS, said:

“These results are worrying and show that NHS Wales and Local Health Boards need to support rheumatology services to meet quality standards for the treatment of RA. It is abundantly clear that patients are not being seen enough within the 12-week window of opportunity of diagnosis. If patients are seen to within this window, their longer-term outcomes are better.”

The report incorporated a number of data sources which included an NRAS survey of 257 people with RA to gain greater understanding of their experience of health and care in Wales. In addition, BSR consulted many of its professional members, which consist of health professionals such as consultant rheumatologists, GPs, physiotherapists and specialist nurses who work in Wales. The report also includes the data from the National Clinical Audit for Rheumatoid and Early Inflammatory Arthritis.

This report forms part of a series the BSR has produced starting with 'The State of Play in UK Rheumatology: Insights into service pressures and solutions in 2015', which highlighted the status of rheumatology services throughout the UK, followed by 'Rheumatology in Scotland: The State of Play'. The fourth report in this series, planned for 2017, focuses on services in Northern Ireland and will enable us to explore similarities and differences in provision of care across the UK.

Rheumatology in Wales: The State of Play is available to download now.

*Key service quality standard from the National Institute for Health and Clinical Excellence

[whisperit]

Thanks very much for this, Kevin. Obviously, the most relevant bit in the report is the section on specialised services for people with rare diseases (including Lupus, Sjogren's, myositis etc). Read in conjunction with Wendy's recent experiences, it does seem to me that there may be a big problem around the recommendations to LHBs/WHSCC to develop consistent and equitable pathways for referral into appropriately expert specialist services (like the Lupus Centres of Excellence). For example, it cannot be right if the decision to refer a particular patient with a rare condition to an out-of-area centre of excellence is handed over to a 'clinical gatekeeper' in one LHB who is applying different criteria compared to the 'clinical gatekeeper' in another.

I worry that the patient voice may not be well represented in these kinds of technical discussions, because professionals may have different priorities (for example, they might be very keen to talk about getting more staff for their department, but less interested in being 'instructed' about how they should make onward referrals).

Obviously, LupusUK is a small organisation, with very limited resources. How can we best get our voice heard in these kind of rather technical discussions?

[Wendy39]

Very interesting Kevin.

Thank you for posting.

No doubt the stats would be even worse for lupus etc.

Wendy

[Kevin53]

It’s interesting because the full report acknowledged the forthcoming arrival of the Lupus nurse in north Wales and the future benefits. The report also highlights that 200 juvenile arthritis cases are not being diagnosed in Wales per annum. The number for young Lupus patients in Wales not being diagnosed is probably similar. Under 19s can be referred to Bristol or Alder Hey. Over 18 and the Gatekeepers arrive!

[HedgeEnd]

Makes very interesting reading. Thanks for posting.

[PMRpro]

Because they go from being under paediatric care to adult care. It happened to my granddaughter in Scotland for asthma care. With the result that no-one would refer her to a centre of excellence or for trials in the 9 months or so before her birthday. She was in resus every few weeks and on high dose pred to keep her alive. Then she went vegan - the asthma is almost gone!

[Catlady56]

Wales is behind in just about everything healthwise. My husband has to travel to Gloucester for his cancer treatment as Wales doesn't have the right equipment in any of their hospitals. Yet Welsh NHS has to pay for the English NHS to provide the treatment - mad.

[PMRpro in reply to Catlady56]

Um - why not? They would have to pay the running costs if they set it all up themselves, it is no different. If a Trust in England sent a patient to another Trust in England for treatment they'd get a bill too.