The North of Scotland Lived Experience Group
The North of Scotland Lived Experience Group
The North Cancer Alliance (NCA), NHS Scotland North, is a collaboration between NHS Boards in the North of Scotland, aiming to significantly improve and equalise outcomes for patients with cancer. The NCA provides strategic focus and vision by taking a regional approach across the three cancer centres hosted by NHS Grampian, NHS Highland and NHS Tayside, which also provide cancer services to NHS Orkney, NHS Shetland and NHS Western Isles.
Decisions to ensure care and treatment is standardised and equal across the North of Scotland requires deep and wide-ranging medical and clinical expertise, on processes of care, systems and clinical performance. However, the NCA recognises the value of insight that people with lived experience of cancer can bring, and we have been asked by our chief executive officers to ensure that patient and carer voices are heard, where possible, in the development of our overall aims, as well as influencing the approach to specific projects.
We have established a small consultative group of people who have experienced cancer services as a patient or carer, and they have already helped us shape information resources for projects and sense checked direction of travel for project applications, as well as critiqued our NCA Nutrition Support Website.
We are looking to grow and diversify that group now, to cover more areas of the North and different types of cancer, and to be as representative of the population as is possible.
The Group meets around four times a year (online via video) to discuss specific issues, with time given before sessions for thinking and preparation. Our intention is also to hold an in-person event in the future, as we appreciate the benefits of face-to-face meetings.
Who Are We Looking For?
Anyone with lived experience of cancer as a patient or carer in the North of Scotland would be very welcome to join.
At this time we are especially looking for people who have experience of cancer treatments in the Highlands and Islands, and for input from patients under the age of 40.
What Sort of Help are we Looking For?
In 2023 we will be developing our strategy for the next five years and this is something we would very much welcome the input of those who have been patients or carers.
As well as our four meetings a year to discuss NCA wide issues, you may want to get involved in one of our projects. Current NCA projects include prehabilitation, prostate cancer risk stratified follow up – how patients are monitored following surgery and updating the Chemotherapy IT system. You may be asked to sense check proposals and/or attend online meetings. As we are keen to ensure that your involvement is meaningful and enjoyable, we can be flexible about how you support us.
Are There Any Rules?
Some of the work we do is at an early stage, or could be sensitive, so we ask you to sign a confidentiality form when you join the group. This is so discussions can be open and transparent, which supports good decision making. We have a guide to being a member of the group that clarifies what the NCA and group members can expect from each other. Get in touch if you would like to see this at gram.noscancer@nhs.scot.
What About Payment or Expenses?
We follow good practice on the payment of expenses for travel and subsistence. We are also scoping out a reasonable payment policy for volunteers so the levels of involvement are fairly remunerated.