Cross-Party Group on Lung Health
Grŵp Trawsbleidiol ar Iechyd yr Ysgyfaint
Minutes from 04 October 2022
MSs
John Griffiths MS (and supported by Shah Shumon)
Mike Hedges MS (and supported by Ryland Doyle)
David Rees MS
Jane Dodds MS (represented by Rhys Taylor)
Vikki Howells MS (represented by Jack Harries)
Non MSs
Joseph Carter - Asthma + Lung UK Cymru (Secretariat)
Anthony Davies
Ben Hope-Gill
Ceri Lane
Chris Davies
Chrissie Gallimore
David Pinnell
Delyth Smith
Deborah Fossett
Dee Montague
Jane Mullins
Jennie
John Morgan
Julie Mayes
Kimberley Lewis
Lorna Philipps
Natalie Janes
Pam Lloyd
Rolande Thomas
Stephanie Morgan
Stephanie Woodland
Steve Jones
Tom Lines
Valerie Tweed
Apologies
Natasha Asghar MS
Hefin David MS
Luke Fletcher MS
Peter Fox MS
Tom Giffard MS
Peredur Owen Griffiths MS
Sian Gwenllian MS
Altaf Hussein MS
Mark Isherwood MS
Sarah Murphy MS
Rhys ab Owen MS
Rhianon Passmore MS
Sam Rowlands MS
Jack Sargeant MS
Buffy Williams MS
Sioned Williams MS
1. John Griffiths MS - Welcome and introductions
John Griffiths MS started the meeting and thanked everyone for attending. asked if any MSs or support staff wanted to introduce themselves. Mike Hedges MS and David Rees MS introduced himself and support staff representing the other MSs introduced themselves.
John Griffiths MS explained that there were two presenters today, Professor Ben Hope Gill and Steve Jones.
He encouraged people to put any questions they had in the chat.
2. John Griffiths MS – Minutes of the last meeting
The minutes were proposed by David Rees MS and seconded by John Griffiths MS.
3. Joseph Carter – Matters arising
The following actions had been agreed at the previous meeting
· Action – Asthma + Lung UK Cymru to consider how they could help with evaluating the apps.
o Ongoing – Asthma + Lung UK Cymru is working with ICST on this
· Action – Everyone is encouraged to think of ways to promote the use of the Asthma and Asthma for Parents apps
o Ongoing
· Joseph Carterto draft letter for John Griffiths MS to send to the Minister
o Completed – she responded on 31 August 2022
4. AGM – Election of Chair and Secretariat of the CPG.
Joseph Carter confirmed that we have one nomination for chair. David Rees MS proposed and Mike Hedges MS seconded.
John Griffiths MS thanked everyone for their support and he nominated Joseph Carter and Asthma + Lung UK Cymru to continue as secretariat. Mike Hedges MS seconded.
Action – Joseph Carter to submit AGM paperwork to the Table Office
5. Professor Ben Hope-Gill, Cardiff and Vale University Health Board - Idiopathic pulmonary fibrosis in Wales
Interstitial lung diseases make up a group of several hundred different conditions. He explained briefly how oxygen transfer worked in the lungs and how the gap between the alveoli and the blood vessels is the interstitium. In pulmonary fibrosis there is an abnomality of the repair system and this leads to the creation of scar tissue. They turn on, but can’t switch off and disrupt the architecture of the lungs.
It is more common in people in men their 60s and 70s. Symptoms include breathlessness, cough and clubbed finger nails.
The medium survival rate for IPF is about 5 years, but everyone is different.
Following a chest x-ray they will be referred the secondary care respiratory team. They will have a CT scan, lung function testing and then the case may be discussed at the regional multi-disciplinary team (MDT) meeting that covers the whole of South Wales if they are a candidate for high cost therapies, any diagnostic uncertainty, and if there is consideration for a lung biopsy and/or transplant. The advantage of this model is that care is provided locally, but they can draw specialist advice from other parts of Wales.
There are currently two drugs that can be prescribed to slow down the rate of scar tissue developing in the lungs:
· Pirfenidone
· Nintedanib
These drugs can only be prescribed to people whose lung function is within a set range. If your lung function is outside of that range, you might only be able to access treatment by taking part in clinical trials.
Professor Ben Hope-Gill paid tribute to the teams across Wales and difference they make to people’s lives.
Joseph Carter asked what the ILD service looked like in North Wales. Professor Hope-Gill explained that model is quite different in BCUHB with a ‘hub and spoke’ model out of Manchester with local clinicians working out of the local hospitals.
The English hospitals have a different funding model so are keen to see patients themselves as well.
Joseph Carter also asked a question about access to spirometry services for people with ILD.
Professor Hope-Gill said that there is a broad understanding of PF in primary care now and he is getting earlier referrals marked as ‘urgent’, who are then getting spirometry.
Steve Jones said he thought that the Welsh model was better than the one in England, where people are referred for treatment too late. He asked whether the roll out of anti-fibrotic medication to other Pulmonary Fibrosis conditions might create capacity problems.
Professor Hope-Gill said in Cardiff, they see 20 new patients per week and this is creating capacity challenges for the MDT. Commenting on the access to anti-fibrotic medication he though that patients with PF that is not IPF have a better experience than with IPF in terms of access to medication. This cohort of patients has to wait until their lung function reduces. It creates an injustice.
Dee Montague asked if patients were invited to be part of the MDT conversations.
Professor Hope-Gill said that the Central MDT discusses many patients and is a diagnostic forum, so to maintain confidentiality of other patients it would be difficult to include patients here. However, the local teams would aim to discuss treatment options as part of the MDT with them.
6. Steve Jones, Chair of Action on Pulmonary Fibrosis - the patient perspective
Steve Jones, Chair of Action on Pulmonary Fibrosis gave a presentation setting out the experience of people with the conditions.
He said that if you google pulmonary fibrosis you would be shocked by what you read. It has a worse prognosis than most cancers, is responsible for 1-1.5% of all deaths. It affects 2500-3000 people across Wales, so it is uncommon but not rare.
When you are diagnosed, apart from breathless you might not feel that unwell, but this will worsen over time, you will eventually need home oxygen and will become more and more disabled extreme breathlessness makes even getting dressed a huge undertaking. Eventually people pass away due to respiratory failure.
The vision of APF is ‘To help find a cure for pulmonary fibrosis and for everyone affected by the disease to have a better future.’
The charity focus on 5 strategic themes:
He described pulmonary fibrosis as being like a tornado, ripping through your like. He said the main issues for patients and family members were:
· Isolation
· Lack of information on the disease and journey
· Lack contact with other patients
· Lack of friends who understand
Steve Jones talked about his own experience of needing to stop several times to walk 100 metres to a meeting.
What are the key issues in Wales?
· Late diagnosis and mis-diagnosis
· Inequality – post code lottery
· Increasing pressure on ILD Specialist nurses
· Oxygen services
· Pulmonary rehabilitation
Steve introduced Rolande Thomas from Carmarthen to give his experience of living with the disease.
Rolande was diagnosed with IPF in January 2018, followed by a heart attack that same year. His rehabilitation for IPF and heart issues when hand in hand. He saw his consultant in July 2022 but his lung capacity had not deteriorated enough to be prescribed the anti-fibrotic medications. He was referred to the National Exercise Referral Scheme (NERS) to help him keep active. His condition didn’t change much until spring 2022 where following a chest infection and deterioration of his IPF it dropped to around 70% and he was prescribed pirfenidone and at the same time was prescribed home oxygen. He has done another rehabilitation course and has found the oxygen has helped a lot. The cylinders weigh a tonne, but make a major difference. The only challenge is that they can only last a couple of hours and the concentrator runs out of battery, so it can limit how far he goes. He has invested in batteries to allow him to go further.
Rolande explained that people in Aberystwyth need to travel to Carmarthen for services. He worries that as his condition worsens, he will find the travel more difficult. He praised the ILD nurses and how much support they gave him.
John Griffiths MS thanked Steve Jones and Rolande Thomas and invited questions. He started by asking about access to lung transplants and whether this is happening much in Wales.
Steve Jones explained that there are 5 centres In England that provide all the lung transplants in the UK. Only around 3-5% of patients are considered and you need to be below 65.
Natalie Janes said that Wales has always lead the way in oxygen therapy, has unified oxygen services and respiratory teams to support patients and families.
7. Joseph Carter – Next meeting and the work ahead
John Griffiths MS asked Joseph Carter to talked about the future meetings. Joseph thanked everyone for their contributions and for making the time to come and confirmed that the next meeting would be on 22 November where the focus would be on COPD.
8. John Griffiths MS - Any other business
John Griffiths MS asked if anyone had any other business. They didn’t, so he thanked everyone for attending and brought the meeting to a close.