WE offer help to those suffering prostate cancer, says Mike Shaw
The Edinburgh and Lothian Prostate Cancer Support Group (ELPCSG) was founded in 1998.
Early meetings were held in church halls ahead of an invitation by Maggie’s to use their centre at the Western General Hospital. A West Lothian branch was formed at St John’s Hospital in Livingston in 2007, later moving to the Ability Centre in Carmondean Road. Together, we decided to form an independent charity in 2010, one entirely run by volunteers.
Why all this concern and activity? Well, because around 3,000 new cases of prostate cancer are diagnosed every year, making it the most common cancer in men – a figure ahead of both lung and bowel cancers. The lifetime risk of prostate cancer for men in Scotland is one in 11, with that risk as much as three times greater if a close relative has the disease.
NHS Scotland has a screening system for bowel cancer, but there is still no national screening system for prostate cancer, a treatable disease if identified early enough.
This is the backdrop to the activity of the ELPCSG with support given in a wide range of different ways, including group meetings and “Buddying”. We continue to work closely with SCAN – the South-East Scotland Cancer Network – NHS Inform and Macmillan Cancer Support, the latter through their “Scottish Involvement Group”, a new initiative to involve people with experience of cancer in decisions about how to improve cancer services. This is very much in keeping with Scottish Government policy to involve more patients in their own care.
We’re also supporting the extension of the Edinburgh Cancer Centre’s “Decision Navigation” scheme that enables patients to prepare for their hospital consultations.
Our backing for Prostate Scotland has included a financial contribution to their Active Surveillance publication, and full endorsement of their Blue Horizon Robot appeal. The recent Scottish Government promise of £2 million to match money raised for the latter will, if successful, improve the options for men in both the east and west of Scotland who need surgical treatment.
As volunteers, we have also taken our involvement to a new level by making submissions to the SMC – the Scottish Medicines Consortium – which approves the use of drugs in Scotland.
We shared in one success when Abiraterone was approved for patients on the NHS with advanced prostate cancer following chemotherapy, a result that also greatly helped families and carers.
The SMC has now made a most positive procedural change in that a submission is required to go through the Pace (patient and clinician engagement) discussion stage ahead of any final decision by the SMC. An impressive example of patient group representatives and the medical profession working together!
Disappointingly, however, Abiraterone was turned down by the SMC earlier this year for use before chemotherapy, despite a strong recommendation from the Pace group that it may be even more effective if given in this way.
The ELPCSG remains confused about this, especially given the drug’s earlier approval for use after chemotherapy, and the fact that the evidence submitted to the SMC fully met their end-of-life criteria. We understand that the company is not submitting a second bid to the SMC, but rather requesting an independent review of the decision.
The ELPCSG will be very interested to learn just what “scientific data” the SMC used in its decision-making, and how this is being played out.
But while, to an extent, it will always remain something of a sair fecht for all voluntary health groups, there really is much to be positive about. Encouraging news stories about research developments have been appearing at regular intervals, while the group’s recent invitation to Holyrood (with MSP Liam McArthur proving an able replacement for original sponsor, Jim Eadie, who was ill) gave a huge boost to the very large number of members, their families and supporters who were present.
The ELPCSG would also like to think that in our own small way we have been contributing to the latest positive statistic that many more men – 84 per cent – are surviving for at least five years with prostate cancer compared with 20 years ago, a tremendous improvement. But there is no complacency in this respect, simply a strengthened commitment to providing support.
• Mike Shaw, Edinburgh and Lothian Prostate Cancer Support Group www.elprostatecancersupport.co.uk