Christmas tears of joy as Baillie celebrates cystic fibrosis campaign win

Vale of Leven Hospital and Jackie Baillie MSP.

By Bill Heaney

Jackie Baillie was in tears in the Scottish Parliament today when she welcomed the news that Vertex will resubmit Orkambi, a life-changing drug for Cystic Fibrosis sufferers, and the next generation of medicine Symkevi, to the Scottish Medicines Consortium.

The submission has come on the back of a long campaign headed by Kelli Gallagher, a cystic fibrosis sufferer from Dumbarton. Kelli and her parents, Maggie and Peter, have publicly campaigned for the drug to be available in the Scottish NHS and have even met with Jeane Freeman, the Cabinet Secretary for Health, to raise the issue in person.

This means that individual patients can apply for Orkambi through their consultants and the PACS Tier 2 process as a new interim price has been negotiated. For Kelli, and other patients like her, this route simply wasn’t working before, but access is now possible and this will make a huge difference to their lives without the need for further delay.

Jackie Baillie has worked with a cross party group of MSPs, Jeane Freeman, he Cabinet Secretary for Health, her officials and Vertex, the pharmaceutical company that manufacture Orkambi and Symkevi to encourage dialogue and action in the interests of CF sufferers like Kelli.

The MSP said: “This is welcome news for people with Cystic Fibrosis in Scotland, and I am grateful that Vertex has decided to resubmit to the Scottish Medicines Consortium. I hope that the Scottish Medicines Consortium will carefully reconsider the submission of Orkambi and the new submission of Symkevi to ensure that Scottish patients have the best possible chance of having access to this life-changing medicine.

Kelli 2“It took enormous courage for Kelli, pictured left with her partner, David, to spearhead this campaign. I know that her determination and persistence, and that of her mother Maggie, has been critical in getting us to this stage. I want to thank her, her family and all those MSPs that joined forces to make this happen. We made a compelling case to the Cabinet Secretary and I will always be grateful that she listened and acted.

“Hopefully now those with Cystic Fibrosis can look forward to a brighter future.”

Kelli’s mother, Maggie, said: ““The announcement by Scottish Government and Vertex is THE best Christmas present my family and the Cystic Fibrosis community could have wished for. 

“As a family, we are overwhelmed and delighted that Kelli and other Cystic Fibrosis patients eligible will now have access to precision medicines and will be given the chance to live the life they truly deserve.

“Although these drugs are not a cure, they can be life changing as they are the first drugs to treat the underlying cause of the condition and not just the symptoms.”

Meanwhile, Jackie Baillie, has raised concerns about the level of nursing capacity which has been planned for as part of the West of Scotland review of Systemic Anti-Cancer Therapy (SACT).

The new model, which was approved by the board of NHS Greater Glasgow and Clyde this week, suggested that the expectation is that in future, 50% of all SACT therapy, which involved the use of cytotoxic drugs to directly destroy cancer cells – the most extensive of which is chemotherapy, would be assessed and prescribed by nurses and pharmacists.

However, the papers projections are that just six Whole Time Equivalent prescribing nurses are required to backfill positions to allow for this change. In addition, just four pharmacists will be recruited across NHS Greater Glasgow and Clyde.

Jackie Baillie said: “It has been suggested that the plans laid out in the West of Scotland cancer care strategy are not entirely realistic when it comes to staffing.

“Six additional nurses and four additional pharmacists across the whole of NHS Greater Glasgow and Clyde, a health board which serves over a million patients, will surely be stretching the staff team too thin.

“I hope that there will be additional capacity provided at the Vale of Leven hospital, particularly as it provides a hugely valued cancer service for a substantial and growing number of local people.

“It is important for the health board that, as they develop their plans, the question of staffing is kept under constant review. A properly resourced service will be best for patients, best for staff and best for the health board.”

New information has emerged which shows a reduction in beds and staffing at the Vale of Leven Hospital over the last 10 years. The figures, which come from an FOI response, show that bed numbers and staff numbers have dropped since 2007.

The shocking figures reveal that in 2007 there were 130 inpatient beds available at the Vale of Leven hospital, but by 2016 that figure had reduced to just 82 beds where it remains today, a total reduction of 36%. In a further blow, the same response reveals that overall staff numbers have been slashed by almost 40%, from 913 in 2007 to just 555 in 2018.

As well as the 40% cut to nursing and midwifery staff, medical staff have been slashed by 70% since 2007.

Jackie Baillie said: “The Vale of Leven Hospital is valued by patients right across Dumbarton, Alexandria and Helensburgh. For patients in my constituency, getting treatment at the RAH or the other hospitals across Greater Glasgow and Clyde is just a journey too far.

Vale in the dark“Hard working staff across the area are struggling to cope with increasing demands but the health board has dramatically cut beds and staff numbers leaving our health service struggling.

“It is increasingly clear that the promises made by the Vale Vision have not been kept, as services continue to be moved away from the hospital and centralised in Paisley.

“It is time that NHS Greater Glasgow and Clyde committed to the Vale and stopped trying to take things away from our local community.” 

Meanwhile, Ms Baillie has called on the Scottish Government to provide additional resources for NHS Greater Glasgow and Clyde after a freedom of information request revealed that the current value of outstanding repairs and maintenance at the Vale of Leven Hospital totals £1.25m.

In the same response, the health board also disclosed that £36.4m is needed for repairs and maintenance at the Royal Alexandra Hospital and £22.6m at Inverclyde Royal Hospital.

While the health board state that none of the outstanding repairs and maintenance is categorised as high risk, some of the necessary repairs include upgrading emergency lighting, which is described as ‘in a poor condition’, replacing distribution boards which are described as ‘passed useful life’ and distribution pipework which ‘requires upgrade’.

Additionally, the health board have advised the MSP that some fittings, including sockets, have signs of water damage.

Jackie Baillie said: “Health boards are already struggling to meet the everyday costs of running our national health service. Staff shortages are pushing our NHS into crisis and treatment is being carried out in hospitals which require ‘millions of pounds’ worth of repairs. 

“It is clear that health boards are struggling to meet these costs with the funding they are currently given.

“The Scottish Government needs to prioritise additional capital funding for health boards to ensure that repairs which are desperately need are able to be done. It is simply unacceptable to expect patients to receive treatment in environments which are not up to scratch.”

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