North London Cancer Network

User involvement is a key aspect in designing, delivering and monitoring cancer services. There are various channels by which patients, relatives and carers can become involved, e.g. through our Cancer Partnership Group, service improvement projects, etc.

Cancer Partnership Group

The Cancer Partnership Group (CPG) was set up by the North London Cancer Network in September 2003. It brings together cancer patients, carers and health professionals from across the network who are interested in shaping the delivery of local cancer services.

Membership has expanded from a handful of user representatives to 17 and we have around 20 active professional members. We should welcome new members, even if you can only attend occasionally. We meet every six weeks or so, usually in the Euston area. Each meeting normally includes a presentation on a topic of current interest. Any travel expenses will be reimbursed.

What do we do?

• Encourage real improvements and a more patient-centred approach to how local cancer services are provided.

• Enable a broad range of local users’ views to be heard to ensure that services reflect the reality for people affected by cancer.

• Identify issues of concern for users and work with the network to promote possible solutions.

• Enable health care professionals and users to meet on an equal footing.

• Motivate and support health care staff to provide high quality services in a more effective way.

Current activities and workplan

Following a CPG survey of voluntary and support groups to determine key areas of concern, we have been looking at ‘privacy, dignity and respect’ issues from the patient’s perspective. Currently we are undertaking a programme of environmental audits or observations at oncology outpatients' clinics across the network to see what small environmental changes might improve patients’ visits.

We have initiated work through the Nursing Board on how supportive and palliative care for cancer patients is co-ordinated, focusing on the identification and role of the patient's key worker or key contact, with special attention to the period after active treatment has finished.

Following up a campaign by Macmillan Cancer Support, we have challenged acute hospital trusts to consider providing free parking for cancer patients, especially those making regular visits for chemotherapy or radiotherapy, in line with the requirements of Disability Discrimination Act 2005. We are pleased to report that a number of trusts do provide free or concessionary parking for cancer patients.

We are currently undertaking a research project into the effects of cancer and cancer treatment on the quality of life of long term survivors with the help of the University College London Marie Curie Palliative Care Research Unit. Our research will focus on patients' care history, current symptoms and quality of life aspects: physical, psychological and practical, e.g. whether there have been any problems about returning to work or maintaining income.

We are seeking to develop our contacts with Local Involvement Networks (LINks) and other patient groups across the network, and with voluntary and charitable organisations supporting people affected by cancer.

We will communicate within the network, in particular to Tumour Boards, the benefits that user involvement can have on future cancer service development, configuration and delivery.

We will continue to respond to requests for advice on patient information material and draft survey questionnaires.

How to become involved

By attending the CPG meetings when you can. If you cannot attend meetings, by letting us know the topics you feel are important, and by commenting on our discussion papers.

Contact the network’s User Involvement Facilitator -

Andrew Poulter
North London Cancer Network
5th Floor East(UCLH)
250 Euston Road
London NW1 2PG

Tele: 07940 587656
Email: andrew.poulter@uclh.nhs.uk

Alternatively please send me your details and I will contact you.