On Monday 14th March I volunteered to take part in a focus group considering how best to involve patients in the development of new drugs. Patient involvement in research seems to be a growing interest nationally and also chimes well with the mission statement of Derriford Hospital – putting the patient first.
The study is being undertaken at the University of Kent and links specifically to the development of a new drug to be used in conjunction with Mitomycin after TURB-T to increase its effectiveness in the treatment of non-invasive, high risk bladder cancer. Patient involvement would not be as guinea pigs but rather as end users who might have useful contributions on the administration of the drug, any side effects and outcomes.
In a Teams meeting with other patients being treated for bladder cancer and two researchers from the University of Kent we discussed a series of questions including whether we, as individuals, would be interested in taking part in the research, how much we understood about drug research and clinical trials, why patient involvement might be useful, how we might wish to be involved (face-to-face meetings, on-line, in print, etc) and what we expected to get out of it.
The discussion highlighted our different experiences of support and engagement with support organisations. At different stages of treatment from different backgrounds and from different parts of the country we all declared an interest in being involved and expected no remuneration because we all felt that we personally might benefit and others certainly would and that would be reward enough. Hopefully I will continue to be involved in this research and be able to share elements of it with our group.
A new technique for analysing tumours called “representative sequencing” is reported in several papers this week. It could be available in the NHS within 3 years. It offers a means of more thorough analysis of a tumour and therefore more accurately identify the appropriate treatment. The results were published in the journal Cell Reports but a brief summary taken from the “i” newspaper is here https://inews.co.uk/news/health/tumour-analysis-personalised-cancer-care-nhs-explained-2843531
May is the month for raising awareness of bladder cancer. On their website the World Bladder Cancer Patient Coalition has produced a toolkit of information on the world wide picture. You may want to take a look at its colourful pages
We asked our CNS what the impact of Covid-19 has been on the Unit. These answers we hope you will find helpful. Where possible clinics are carried out by phone. If you are invited into the Unit you will be telephoned 24 hours before the appointment to confirm that you are well enough to visit and are still willing to come into Derriford. Whether you are a new patient or an existing one you still arrive and leave the Unit by the single entrance but when you come in your temperature will be checked. Staff temperatures are checked daily. Staff and patients wear PPE where face to face contact is necessary.
Telephone clinics reduce footfall into the hospital, therefore reducing clinical risk for patients and staff.
For new patients
Assessments for bladder, kidney and prostate symptoms are still being carried out but results are given by phone and letter. For bladder cancer patients TUR-BTs are still being carried out but at Care-UK rather than Derriford. Pre op assessment along with COVID 19 swabs are done at Care UK. Bigger operations such as nephrectomies and cystectomies are still going ahead at Derriford. Pre op assessments/COVID 19 for these patients take place at Derriford. Lynher ward has moved. Post op patients are nursed on Stonehouse Ward at present.
For existing patients
Cystoscopies are still being carried out on time and in the Unit. BCG and mitocycin treatments are being administered only to high risk patients. Other treatments are deferred. Chemotherapy is being offered on a reduced service by Oncology which is operating out of the Nuffield Hospital across the road.
What contribution can patients make to saving lives? Follow the goverment advice and any directions of the hospital on your visit. Stay safe.