Thursday, 13 July 2017

Growing Pains: Senedd demands specialist arthritis service

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Arthritis is perhaps stereotyped as an "old person's disease" caused by joint wear and tear, but there are a number of arthritis and arthritis-like conditions that can strike at any age such as juvenile idiopathic arthritis, lupus and fibromyalgia.

Even if children can grow out of juvenile arthritis, if it isn't properly treated it can cause lifelong disabilities.

This is another member's debate where I have personal experience. My younger brother has, and my mother had, ankylosing spondylitis (a type of rheumatoid arthritis affecting the spine) - so I know full well the impact arthritis has on a young person as I've seen it for myself.

The motion calls for the Senedd to:

  • Note that Wales is the only part of the UK without a paediatric rheumatology centre, with an estimated 400 children in south Wales alone suffering from juvenile arthritis.
  • Note an ongoing review into specialist children's health services.
  • Call upon the Welsh Government to back calls by arthritis charities to establish a specialist children's arthritis centre in Wales.
Much of the debate focused on constituents' stories and those from a recent event raising awareness of juvenile arthritis held at the Senedd. Many stories were typical of problems facing individuals with less common diseases, like late diagnoses, lack of training and awareness amongst NHS staff, a lack of specialist local services and bullying by other children.

David Melding AM (Con, South Wales Central) was surprised such services didn't already exist. Underlining the urgency, he told the chamber there was only one specialist rheumatology consultant (based in Cardiff) providing a majority of services in Wales and they were close to retirement.

Children often can't do the same things as their peers due to mobility problems, and Julie Morgan AM (Lab, Cardiff North) raised the amount of time children have to take off school to spend in hospital, which can impact their studies; a constituent had to pay for private tuition to make sure their daughter successfully got through her GCSEs with good grades.

Along similar lines, both Joyce Watson AM (Lab, Mid & West Wales) and Rhun ap Iorwerth AM (Plaid, Ynys Môn) said the long distances children often had to travel to receive treatment was in itself an uncomfortable experience for them. Rhun also argued that while south Wales may have the patient numbers to support a specialist centre (a recommended 1 specialist consultant per 200,000 resident children), north Wales would find it more difficult.

With a lack of specialist medical services, the role of volunteers to provide support services is important. Hefin David AM (Lab, Caerphilly) highlighted the work of Arthritis Care in his constituency, who provide advice on exercise, employment, accessing welfare and pain management.

According to Health Secretary, Vaughan Gething AM (Lab, Cardiff W. & Penarth), the Welsh Government couldn't support the wording of the motion (due to an ongoing review of health & social services) and would abstain. He also claimed concerns about services in north Wales being provided at Alder Hey Hospital in Liverpool hadn't been raised before, but he would reflect on comments made in the chamber.

However, the Health Secretary did acknowledge "current provision....could be improved". In terms of specific actions, the commissioning directives for arthritis (which guide how health boards provide services) will be updated to ensure patients are able to manage their condition and live their lives as they want to (calling back to accounts of children being unable to do the same things as their peers).

The rest of it essentially boiled down to, "Wait for the review."

In reply to the debate, Dr Dai Lloyd AM (Plaid, South Wales West) - who has 35+ years experience as a GP – believed it wasn't sufficient to say something's a good idea then refer it to a commission; "we have to take action now". Moving hospital services into the community is all well and good, but we still need specialist services that can only be provided at specialist centres.

The motion was approved with 27 votes to 9 abstentions.


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