Public & Patient Involvement within the Cancer Network

The purpose of Patient and Public Involvement within the Cancer Network is to provide a unique platform through which the voices of individuals affected by cancer throughout Northern Ireland can be heard and acted upon. Involvement which is both active and meaningful will ensure that patients and the public are enabled to participate in the planning and development of cancer services.  Involvement can be at individual level in planning their own care through to active involvement in the development of regional policies or standards.

Patient and Public Involvement within NICaN aims to include:

• individuals who have had a diagnosis of cancer;
• family members of people diagnosed with cancer;
• carers or friends of those diagnosed; and
• other individuals who have an interest in cancer services.

What does Patient and Public Involvement look like within the Cancer Network?

Patient and Public Involvement is currently being developed in a variety of ways;

1. NICaN PPI Forum - the forum brings together a group of patients and the public in order to steer the development of PPI within NICaN and to contribute to service planning and delivery across NICaN's clinical networks.
2. The PPI Forum Leads, Mr Alex McGuiggan , Ms Bernie Montgomery and Ms Madeline Mulgrew, sit on the Cancer Network Board.
3. Members of the PPI forum represent patients at meetings of the clinical Networks
4. NICaN has also established a Regional Patient and Public Forum - This is a group which allows the Network to come together with individuals, charities and support groups to share information and expereinces in order to shape the future delivery of cancer care in Northern Ireland.  For dates of upcoming meetings click here.

 To view a copy of the Public & Patient Involvement Constitution click here.

Why is patient and public involvement important?

Actively involving patients and the public in the planning & provision of health care in general has been noted to bring many advantages to both those who receive and those who provide care. These include:

• increased patient satisfaction and reduction in anxiety with positive health effects as individuals become more involved in their care;
• improved communication between service users & professional staff ; and
• better outcome of care with greater accessibility to and acceptability of services.

(Patient & Public Involvement in Health-evidence for Policy Implementation, 2004)

It has also been noted that the involvement of patients and the public should occur simply because public services, being paid for by people, should be shaped by them.

Recent successes

The Service Framework for Cancer Prevention, Treatment & Care

NICaN was asked by the Department of Health, Social Services and Public Safety to lead on the development of a set of standards for cancer prevention, treatment and care.  The standards will influence the planning and delivery of cancer services for the next 3 years (2009 to 2012) and into the future.  Patients and the public have actively helped to shape this document through a series of public meetings and workshops held across Northern Ireland.  Not only did they influence which standards should be included but they also helped to ensure that the framework document was written in plain english.  Thanks to all of you who took part in the process!

The framework document has now been submitted to the DHSS&PS and will be sent out for public consultation in Autumn 2008.

To see the draft version of Service Framework for Cancer Prevention, Treatment & Care click here.

Launch of sign posting booklet

The Regional Forum identified the need for a simple handbook that would signpost  people affected by cancer, and their families, to the help and support they need.  NICaN has worked with patients and local charities to develop the booklet, which was launched in Stormont on 26th February 2008.  Thanks go to Macmillan, who funded the project.

To see the booklet click here.

A Patient Led Programme on Largnygectomy Care

Mr Alex McGuiggan is one of the Forum Leads within the Cancer Network. Alex has had a laryngectomy and is a previous vice president of the National Association of Laryngectomee Clubs (NALC).  Alex has developed a training resource aimed at raising professional awareness about the care of laryngectomees, especially in emergencies.   Alex has trained a number of fellow laryngectomee's to deliver the programme, which is now available throughout the United Kingdom.  Thanks go to Alex for all his hard work and to Macmillan Cancer Relief who have supported the project. 

To view Alex's presentation click here

Looking ahead
Further work is in the pipe line which will link Forum members with health professionals as they undertake specific projects in the areas of chemotherapy within the community and supportive and palliative care.