AGM & Spotlight on community care
Joining up health, social care, employment and education.
The group's Annual General Meeting, and was held on 7 October 2008, in the Committee Room in the House of Commons.
On a call for nominations, Dr Richard Taylor MP proposed that all officers from the previous year be re-elected. This was seconded by John Baron MP, and agreed by all present. Therefore the officers remain as before.
Spotlight on community support
Professor Mayur Lakhani
The meeting then focused on the joining up on community care and support services for children with cancer. The group heard from two speakers on the subject: Professor Mayur Lakhani, a practising GP who is currently Independent Chair of the Community Care Working Group for children and young people with cancer, and Manvir Randhawa, a young person who spoke about her own personal experiences.
Prof Lakhani explained the remit of the Community Care Working Group, which has been set up by CLIC Sargent, the children's cancer charity, as part of the Government's initiatives in the Cancer Reform Strategy on improving cancer treatments. The Group has this year been reviewing community care services, and will shortly be publishing recommendations on improving equity of access to community resources, and increasing access to social care and educational support for children and young people with cancer.
He said that the Group had found in its inquiry that the key issues to be addressed were the co-ordination of care services and the involvement of families in the decision-making process. In consulting with children with cancer, they had found their main priority was to be able to go home during treatment.
Prof Lakhani said that the Group would be recommending three things:
There should be a 'navigator' of care services: a clinical nurse specialist should be assigned to be the one point of contact who oversees the patients' care plan (including clinical and non-clinical factors).
There should be a community multi-disciplinary team (including a teacher, social worker, etc) who meet at the time of diagnosis to come up with a formal care plan.
There should be standard assessment and care planning at defined points in the cancer journey.
Manvir then spoke about her personal experiences. She mentioned difficulties in continuing her education during her treatment – she was away from college a lot, and found the teaching assistants in hospital unable to properly help her with work. She said she also found that the teachers at her college could be quite discouraging, advising her to take a year out rather than focus on her work. Manvir also spoke about her loss of confidence with treatment, and the difficulties she found in relating with peers at her college. She highlighted the benefit she had got from trips organised by her hospitals and charities with other young people with cancer, being around other people her age in similar situations.
Members of the APPG at the meeting were particularly struck by her comment, "Being sick was the easy part", in emphasising the importance of non-medical care in supporting children with cancer.
Download Professor Lakhani's presentation [Powerpoint].