ACTION PLAN FOR IMPLEMENTATION OF PATIENT AND CARER INVOLVEMENT

ACTION PLAN FOR IMPLEMENTATION OF PATIENT AND CARER INVOLVEMENT IN SE WALES CANCER NETWORK

AIM

ACTION

TIMESCALE

Initial Period

(6 Months)

1. To identify any existing arrangements for User Involvement in the South East Wales Cancer Network

1. (a) Discuss with Network Director extent of User Involvement within Network at present.

March 2005

Short Term

(12 Months)

1. Identify and contact Self Help & Support groups and organisations for people affected by cancer in SE Wales

1. (a) Use existing directories of cancer services

(b) Check internet sources

(c) Yellow Pages

(d) Voluntary Associations

(e) Networking

(f) Contact groups via telephone, letter & visit.

September 2005

2. Identify sources of potential new members in order to establish a network User Involvement Group

2. (a)Use posters to advertise establishment of group

(b)”Post” advert on the Cancer Voices Website

- opportunities for involvement section

(c) Making self help and support groups aware of the project and establishment of User Involvement Group.

September 2005

AIM

ACTION

TIMESCALE

3. Publicize the project in order to recruit new members to establish a Network User Involvement group.

3. (a) letters of introduction

(b) publicity posters

(c) leaflets

(d) talks to self help and support groups

(e)talks on user involvement to various groups including nursing students and GPs

(f) contact with:

• self help and support groups

• GPs and Local health Boards

• Community health councils

• Outpatient department managers

• Clinical nurse specialists in cancer services

• Voluntary associations

• Word of mouth

• Health open days within the region

September 2005

4. Collate contacts from patients and carers who have expressed an interest in becoming involved in a User Involvement Group

4. (a) Establish a database of contacts

September 2005

5. Timetable first meeting of User Involvement Group

for mid year 2005

5 (a) June 29^th and then subsequently four times per year

September 2005

AIM

ACTION

TIMESCALE

6. Collate contacts of health care professionals expressing a wish to get involved in a User Involvement group

6. This could be done through networking and establishing links from self help and support groups that have input from health professionals.

September 2005

Medium term

(1-2 Years)

1. Continue to recruit new members to the Network User Involvement Group

1. See 2 and 3 above

September 2006

2. Establishment of locality groups around the SE Wales region

2. These can be attached to self help and support groups; NHS trusts or local hospitals

September 2006

3. Determine feasibility of site specific groups

3. This would be determined by numbers of patients with specific cancers and ability to maintain specialist nurse input.

September 2006

4. Patient representatives on each Site Specific Advisory Group

4. Could utilize members of site specific self help groups to co-opt a member and then feedback to the Network patient group.

September 2006

5. Establish group of patients wishing to participate informally in the work of User Involvement group

5. (a) This could be done by individuals participating via e- mail, post or telephone and completion of surveys etc.

(b) development of Patient involvement Newsletter to keep members informed and serve as publicity for the work of the group

September 2006

AIM

ACTION

TIMESCALE

6. Patient satisfaction surveys

6. (a) To obtain views and issues raised by patients and carers especially for site specific cancers

(b) can be used to accommodate individuals not wishing to formally attend meetings etc

September 2006

7. Training

7. (a) organise training for group members and individuals participating in Patient Involvement – CancerVoices can provide this

(b) CancerVoices also provide training for the Cancer Support certificate

(c) Look at possibility of individuals accessing the Expert Patient Programme

(d) health professionals involved in the group should also be offered the training available to the rest of the group

(e) Promote User involvement at grass roots level by including awareness of it at training days provided for health care workers and students.

September 2006 and on-going

Long Term

(3 years)

1. To maintain levels of user involvement at established levels and aim to improve in areas where interest or involvement may have waned

1. Difficult to foresee at present areas that interest may decline.

September 2007

AIM

ACTION

TIMESCALE

2. Secure continued funding from Network to support user involvement in the future

2. (a) The continued role of the Patient Involvement Officer can ensure that the activities of User Involvement groups continue to receive regular administrative support and ongoing publicity.

2. (b) Macmillan Cancer Relief grants available annually (up to £5,000 p.a) for the running costs of Patient Involvement groups at all levels.

September 2007

3. Ongoing patient satisfaction surveys to ascertain and maintain patient satisfaction in relation to treatment of site specific cancers.

3. (a) These would originate from site specific areas or site specific advisory groups but the User involvement Group and Patient Involvement Officer could assist in the distribution, collection and publicity etc.

September 2007

4. Maintain contact and good working relationships with self help and support groups.

4. (a) Working with the self help and support groups will be the key to maintaining patient and carer involvement for the network in the future.

September 2007