Welsh Cancer Networks: Strategy for User & Carer Involvement · ‘User/Carer Involvement’ is defined as the active participation of people affected by cancer in the policy development,

Welsh Cancer Networks: Strategy for User & Carer Involvement

FINAL

NOVEMBER 2005

NNOORRTTHH WWAALLEESS CCAANNCCEERR NNEETTWWOORRKK RRHHWWYYDDWWAAIITTHH CCAANNSSEERR GGOOGGLLEEDDDD CCYYMMRRUU

Welsh Cancer Networks: Strategy for User & Carer Involvement 1

Welsh Cancer Networks User Carer Involvement Strategy For the purpose of this document, the term ‘user/carer’ refers to people who have been affected by cancer and have experienced cancer services as a patient, relative or friend. ‘User/Carer Involvement’ is defined as the active participation of people affected by cancer in the policy development, planning and delivery of cancer services, both locally and nationally. Introduction The idea of involving patients and carers in the development of health services is not new – its importance in the provision of good quality care has been highlighted in many health policy documents. However the development of a patient focused service is a great undertaking and in cancer care the resources to take this initiative forward has not been as forthcoming as the policies. When the Welsh Cancer Networks were established in 2002 there was very little evidence of integrated structures within cancer services for the involvement of patients and their carers in the improvement of cancer care. The Cancer Networks recognised the need for additional funding and support to promote user involvement in cancer services and in 2003 launched a three year User/Carer project in partnership with Macmillan Cancer Relief. Since clinical networks have been recognised as the way forward in the management and development of specialised services such as cancer1,2, it was considered that user involvement should be encompassed within the network structure. A sum of £15,000 per annum for three years has been made available to each network for the funding of a part time user involvement facilitator. The final report of a similar project in England3 acknowledged that the guidance provided by a facilitator was core to the increase in user involvement which was seen in the Cancer Networks during the course of the study. A user involvement group has now been established in each of the Cancer Networks in Wales. Approximately 70 patients are currently involved in cancer specific user groups across Wales and the voice of patients and carers is beginning to be heard at all levels of cancer services. However, bearing in mind that an estimated 15,000 people will be diagnosed with cancer this year in Wales4 the number of users involved is still small. It reflects the extent of the culture change and the many barriers that need to be overcome in order to establish meaningful and effective user involvement.

1 Design for Life: Creating world class Health and Social Care for Wales in the 21st Century - Welsh Assembly Government May 2005 2 Welsh Health Circular (2005) 051 Cancer Services in Wales – Publication of National Cancer Standards and the implication for Commissioners and Providers, through the Cancer Networks Welsh Assembly Government June 2005 3 Sitzia J, Cotterell P, Richardson A. (2004) Formative Evaluation of the Cancer Partnership Project. London: Macmillan Cancer Relief 4 Triennial Report: Cancer Incidence, Mortality & Survival in Wales Welsh Cancer Intelligence & Surveillance Unit June 2005


The Networks greatly appreciate the support given by Macmillan Cancer Relief in the funding of the User/Carer Project, but long term support is essential if this priority in cancer service provision is to be realised and sustained. This document sets out a strategy for the continued development of user involvement in each of the Welsh Cancer Networks. Because of differences in the geography and structure of the respective Networks it is recognised that the pattern of development will vary in detail for the three regions. However it should be emphasised that the framework put in place by Macmillan Cancer Relief for the support of user involvement enables facilitators across the UK to share good practice and work together towards common goals.


Contents

Policy Statement Page 4 Cancer Networks, Services and Statistics Page 4 Methods of Involvement Page 5 Recruitment of Users Page 5 Issues for Consideration Page 6 Cancer Network Strategies: South West Wales Cancer Network Page 7 - 13 South East Wales Cancer Network Page 14 - 20 North Wales Cancer Network Page 21 - 26 All Wales Page 27 Support Costs Page 28 Future Page 29 Recommendations Page 29 - 30


Policy Statement In 1996 the Calman-Hine Report5 highlighted the need for patients to be at the centre of service planning and development. In 1997 the Cameron Report6 re-iterated those same points for Wales. More recently, the NHS Cancer Plan7 in 2000 and the NICE Supportive & Palliative Care Guidance8 in 2004 have stressed the need for user and carer involvement. The Health and Social Care Act9 in 2001 placed a legal duty on all NHS organisations to involve patients and the public in the policy, planning and delivery of services. The awareness amongst health care professionals to the importance and legal obligation of user carer involvement in cancer care is increasing. The National Standards for Cancer Services10 in Wales were developed with the involvement of users and carers; regrettably this is not everyday practice in health care services. Cancer Networks, Services and Statistics The Cancer Networks in Wales bring together primary, secondary, tertiary and voluntary sector providers, social services and commissioners to develop and improve cancer services. Cancer networks were one of the first clinical networks to be established in Wales and a Welsh Assembly Government Report11 supports the development of these networks in other specialist areas. Not only does the recent report ‘Design for Life’ support the development of clinical networks, but it also advocates a greater authority for networks over specific areas of health. The Welsh Assembly Government has published national standards for cancer services and expects the Cancer Networks to ensure that these standards are achieved by 2009.

5 A Policy Framework for Commissioning Cancer Services: guidance for purchasers and

providers of cancer services. 1995 A Report by the Expert Group on Cancer to the Chief Medical Officers of England and Wales, Department of Health, London. Welsh Office, Cardiff.

6 Cancer Services in Wales: A Report by the Cancer Services Expert Group. 1996 Volumes 1 & 2. Welsh Office, Cardiff. 7 The NHS Cancer Plan A plan for investment a plan for reform - Department of Health

September 2000 8 Guidance on Cancer Services Improving Supportive and Palliative Care for Adults

with Cancer The Manual – National Institute of Clinical Excellence (NICE) March 2004 9 Health & Social Care Act 2001 – Department of Health © Crown Copyright

http://www.opsi.gov.uk/acts/acts2001/20010015.htm 10 National Standards for Cancer Services 2005 Welsh Assembly Government/Cancer

Services Co-ordinating Group - http://www.wales.gov.uk/subihealth/content/cancer/national-standards-e.htm

11 Design for Life: Creating world class Health and Social Care for Wales in the 21st Century - Welsh Assembly Government May 2005


It is essential that the Networks involve patients and carers in the improvement of cancer services if they are to fulfil:

1. The Health & Social Care Act 2001, which places a legal duty on all NHS organisations to involve patients and the public in the planning, policy and delivery of services.

2. A regional role to ensure that the quality of cancer services being

delivered is what people really want and need. Methods of Involvement Involvement can be at individual or group level. Some of those methods are listed below: Individual Group • Questionnaire based surveys • Network Partnership Group • One to one interviews • Local user group • Patient diaries • Involving people on committees • Written consultation • Focus groups At whichever level, effective and meaningful involvement depends upon the collaboration and partnership of users, commissioners and providers of services. All stakeholders benefit from working in this way:

1. Cancer Teams - The site specific teams are able to develop their services with the involvement of users to benefit the teams and their patients;

2. Cancer Networks - The Cancer Networks are able to develop services according to the needs of the providers, commissioners and users;

3. Service Users and Carers - Service users and carers benefit from receiving better services with added trust, openness and ownership of those services.

Recruitment of Users Health Care Professionals/Teams: Health care professionals are a major link to recruiting service users and involving them in service developments as they have daily contact with service users and carers. Site-specific teams need to be made aware of how they can inform patients about possibilities for involvement and to whom they can refer patients with an interest in becoming involved. Training for health care professionals creates better awareness of the benefits of actively involving services users and carers in the day-to-day running of services they are providing. Voluntary sector: It is vital to inform and involve the voluntary sector to gain the support and cooperation of all communities, including black minority, ethnic and hard to reach groups. Although cancer may not be first on the agenda for some of these


communities, there are few people whose lives have not, in some way, been touch by cancer. Liaising and involvement with cancer self-help and support groups is also valuable in the development of user and carer involvement. The user carer project has worked in close co-operation with the Macmillan Community Networks Team and with CancerVOICES to encourage members of self help and support groups to have their voice heard. Raising Awareness: Leaflets and posters are common tools used to recruit service users. However, only small numbers of people are recruited from these methods and some people who go through these channels may be inappropriate in some circumstances. These methods also have considerable financial implications and may not be cost effective. Targeted methods of advertising, such as adding leaflets to patient information packs may prove to have greater impact. Promotion of user carer involvement through conferences, articles and open days will publicise the opportunities for user involvement amongst patients and healthcare professionals. Issues for Consideration Barriers to achieving aims:

Poor response from public Poor response from health care professionals Limited funding e.g. will need to reimburse group members for travelling

expenses and also to provide refreshments and stationary items for meetings.

Contingency plans if response is initially poor:

Find alternative ways of publicizing the project and the setting up of User Involvement initiatives.

Discuss with Patient Involvement Leads as to how they achieved the contacts and any barriers they encountered.

Consider using a questionnaire to ALL cancer patients in Wales - Ethics committee approval; construction of questionnaire; increased workload (in limited time) to collate the information obtained; not guaranteed to increase interest; too pushy!!


South West Wales Cancer Network Summary

The South West Wales Cancer Network includes the counties of Carmarthenshire, Ceredigion & Mid Wales, Neath Port Talbot, Bridgend12, Pembrokeshire, Powys13 and Swansea. The regions population is approximately 846,000 people14 (29%) living in 57% of the country15. The communities range from sparse rural communities to highly populated towns or city. There are some social economic differences from the growing developments of town and city life, to the post-industrial deprived and rural communities.

The table does not indicate the population spread across the region. However, this factor is supported by the smallest area in this region hosting one quarter of the regions population. Local knowledge is imperative to understanding communities, including small communities of black, minority ethnic people and hard to reach groups. Current provisions: User Carer Involvement - South West Wales Cancer Network The South West Wales Cancer Network, for a number of years, has ensured the views of users and carers has been sought for in most aspects of cancer services, where possible. However, the involvement of service users was improved with the development and initiation of the Macmillan User Carer Involvement Project. Through the project the Network has established one active Patient and Carer Forum (Cancer Patients Forum) and through many other means the network 12 Cancer services for patients in Bridgend are split between South West and South East Wales Cancer Networks/Centres as per the arrangements of Bridgend Local Health Board. 13 Cancer Service for patient in Powys is split between the 3 Welsh and 2 English cancer networks/units as no specialist services are provided within Powys. 14 Office for National Statistics 2001 - http://www.statistics.gov.uk 15 http://www.wales.gov.uk 16 Triennial Report: Cancer Incidence, Mortality & Survival in Wales Welsh Cancer Intelligence & Surveillance Unit June 2005

South West Wales Cancer Network Statistics Population13 Area14 Mean No. of Cancer

Incidences/annum16 Carmarthenshire 173,635 2,395 km2 958.9 Ceredigion & Mid Wales 75,384 1,795 km2 369.7 Neath Port Talbot 134,471 442 km2 749.1 Pembrokeshire 112,901 1,589 km2 631.4 Powys 126,344 5,196 km2 679.5 Swansea 223,293 378 km2 1237.6

Total (as percentage in Wales) 846,028 (29%) 11,795 km2 (57%) 4626.2 (31%)


involves service users across the region at every level. The network has also carried out a comprehensive satisfaction survey in south west Wales17, which provided a detailed view from patients and carers on cancer services within south west Wales.

17 Dr Al-Ismail S, Tranter G, Wareham K. Patients View about Cancer Services in South West Wales: Patient Satisfaction Survey. November 2005. South West Wales Cancer Network


TIMESCALE

AIMS

OBJECTIVES

Initial Period (1 year)

1. To identify existing arrangements for user

involvement in the South West Wales Cancer Network

• Discuss and network with:

a. Network teams b. Patient and public involvement leads c. Non-statutory organisations

To map existing arrangements • Research existing patient and public involvement

strategies for NHS organisations

2. Identify any areas of good practice

• From discussions and networking identify any areas of

good practice that maybe ‘taken on board’ by the network

• Research user involvement good practice to identify the means of establishing user involvement in the network

3. Identify any gaps

Liaising and linking to: • Self-help and support groups • User and carer involvement forums

4. Identify stakeholders

• From discussions and networking identify all stakeholders • Research user involvement good practice to identify

means of establishing user involvement in the network


TIMESCALE

AIMS

OBJECTIVES

Short Term (1 - 2 years)

5. Identify and contact self-help & support

groups and support organisations for people affected by cancer in south west Wales in order to identify potential members for user involvement

• Use existing directories of cancer services • Check internet sources • Telephone books • Welsh Association of Voluntary Services • Contact groups via telephone, letter & visits/talks

6. Contact all specialist teams to raise awareness

of user involvement responsibility

• Presentations at conferences/workshops • Individuals or teams by means of:

a) Correspondence; b) E-mails c) Telephone d) Meetings

• Networking

7. Publicise the project in order to raise

awareness and recruit new members to establish user and carer involvement and/or partnership groups

• Publicity

a) Posters b) Flyers c) Leaflets d) Adverts e) Local radio interviews f) Public meetings/Open days

• Talks/presentations: a) Self help and support groups b) Healthcare teams c) General Practitioners/Primary Care d) Nursing/Medical Students


TIMESCALE

AIMS

OBJECTIVES

e) Voluntary organisations/groups f) Communities g) Community Health Councils h) Conferences/workshops

• Newsletters • Word of mouth • Open days/abstract presentations

Medium Term (2 – 3 years)

8. Develop a user carer involvement action plan

for the South West Wales Cancer Network

• Action Plan to be based on:

a) Evidence b) Project Report c) Project Strategy d) Current & Future possibilities of cancer services

9. Develop and establish user carer involvement

in local arrangements and explore possibilities of cross boundary working

• Carmarthenshire • Ceredigion & Mid Wales • Neath Port Talbot • Pembrokeshire • Powys • Swansea

10. Identify training and development needs for

service user carer involvement

• Resources • Relevance • Accessibility • Delivery • Custom/Design


TIMESCALE

AIMS

OBJECTIVES

Long Term (3 - 5 years)

11. Integrate user carer involvement into all

groups and practices in the South West Wales Cancer Network

• All site specific cancer specialist teams:

a) Breast b) Lung c) Colorectal d) Gynaecological e) Haematological f) Upper Gastrointestinal g) Skin h) Urological i) Head & Neck j) Thyroid

• All other specific groups established in the network: a) Palliative Care b) Oncology c) Neurology d) Genetics e) Pathology f) Radiology g) Information, Management & Technology h) Pharmaceutical i) Nursing and Allied Health Professional j) Health Promotion/Disease Prevention

12. Integrate user carer involvement into all executive decisions

• South West Wales Cancer Network Advisory Group • South West Wales Cancer Network Board


TIMESCALE

AIMS

OBJECTIVES

13. Where possible, identify regional lead for user

carer involvement

• South West Wales Cancer Network Service User Lead


South East Wales Cancer Network Summary

The South East Wales Cancer Network includes the counties of Bridgend18, Vale of Glamorgan, Cardiff, Rhondda Cynon Taf, Merthyr Tydfil, Caerphilly, Blaenau Gwent, Torfaen, Monmouthshire and Newport. The regions population is approximately 1.4 million people18 (48%) living in 14% of the country19. The communities within the region range from some rural communities to the highly populated towns or cities. There are also social economic differences from the growing developments of town and city life, to the post-

industrial deprived communities. As the diagram below show, the region holds nearly half the population of Wales in less than one fifth of the country’s land.

The table shows that the majority of people in south east Wales live in relatively close proximity. Current provisions: User Carer Involvement - South East Wales Cancer Network Velindre Hospital has a Patient Liaison Group that was established in the spring of 2002 and became fully active in autumn 2002. It is not however affiliated to the Network and does not have any representation on any of the Network Advisory Boards. It is however important to establish and maintain links with this group as it represents the voice of the patients who receive their cancer treatment at South East Wales’ Cancer Centre. I established contact with the group in February 2005 18 Cancer services for patients in Bridgend are split between South West and South East Wales Cancer Networks/Centres as per the arrangements of Bridgend Local Health Board. 19 Office for National Statistics 2001 - http://www.statistics.gov.uk 20 http://www.wales.gov.uk 21 Triennial Report: Cancer Incidence, Mortality & Survival in Wales Welsh Cancer Intelligence & Surveillance Unit June 2005

South East Wales Cancer Network Statistics Population19 Area20 Mean No. of Cancer

Incidences/annum21 Bridgend 128,650 246 km2 637.7 Vale of Glamorgan 119,293 335 km2 577 Cardiff 305,340 140 km2 1340 Rhondda Cynon Taf 231,952 424 km2 1133.9 Merthyr Tydfil 55,983 111 km2 286.1 Caerphilly 169,521 278 km2 765.4 Blaenau Gwent 70,058 109 km2 360.7 Torfaen 90,967 126 km2 442.6 Monmouthshire 84,879 850 km2 411 Newport 137,017 190 km2 619.5

Total (as percentage in Wales) 1,393,660 (48%) 2,809 km2 (14%) 6573.9 (44%)


and members have been invited to attend meetings of the Network’s User Involvement group when it is established. Two of the Network Site Specific Advisory Groups currently have patient or carer representatives sitting on them. These are the Haematology and the Lung groups. These representatives currently act as lone individuals. I feel it is important to provide a point of contact and support for these individuals who could be invited to join the User Involvement group or if they wish remain as individual representatives who could feed back to the group either in person or via e-mail or letter.


TIMESCALE

AIMS

OBJECTIVES

Initial Period (1 year)

1. To identify any existing arrangements for User

Involvement in the South East Wales Cancer Network

• Discuss with Network Director extent of User

Involvement within Network at present

Short Term (1 – 2 years)

2. Identify and contact Self Help & Support

groups and organisations for people affected by cancer in south east Wales

• Use existing directories of cancer services • Check internet sources • Yellow Pages • Voluntary Associations • Networking • Contact groups via telephone, letter & visit

3. Identify sources of potential new members in

order to establish a network User Involvement Group

• Use posters to advertise establishment of group • ”Post” advert on the Cancer Voices Website • Making self help and support groups aware of the

project and establishment of User Involvement Group

4. Publicise the project in order to recruit new

members to establish a Network User Involvement group

• Letters of introduction • Publicity posters • Leaflets • Talks to self help and support groups • Talks on user involvement to various groups including

nursing students and GPs


TIMESCALE

AIMS

OBJECTIVES

• Contact with:

a) Self help and support groups b) GPs and Local health Boards c) Community health councils d) Outpatient department managers e) Clinical nurse specialists in cancer services f) Voluntary associations g) Word of mouth h) Health open days within the region

5. Collate contacts from patients and carers who

have expressed an interest in becoming involved in a User Involvement Group

• Establish a database of contacts

6. Timetable first meeting of User Involvement

Group for mid year 2005

• June 29th and then subsequently four times per year

7. Collate contacts of health care professionals

expressing a wish to get involved in a User Involvement group

• This could be done through networking and

establishing links from self help and support groups that have input from health professionals

Medium Term (2 – 3 years)

8. Continue to recruit new members to the

Network User Involvement Group

• As per aims 2 and 3 above.


TIMESCALE

AIMS

OBJECTIVES

9. Establishment of locality groups around the

south east Wales region

• These can be attached to self help and support

groups; NHS Trusts or local hospitals

10. Determine feasibility of site specific groups

• This would be determined by numbers of patients with

specific cancers and ability to maintain specialist nurse input

11. Patient representatives on each Site Specific

Advisory Group

• Could utilize members of site specific self help groups

to co-opt a member and then feedback to the Network patient group

12. Establish group of patients wishing to

participate informally in the work of User Involvement group

• This could be done by individuals participating via e-

mail, post or telephone and completion of surveys etc • Development of User Involvement Newsletter to keep

members informed and serve as publicity for the work of the group

13. Patient satisfaction surveys

• To obtain views and issues raised by patients and

carers especially for site specific cancers • Can be used to accommodate individuals not wishing

to formally attend meetings etc


TIMESCALE

AIMS

OBJECTIVES

14. Training

• Organise training for group members and individuals

participating in User Involvement • CancerVOICES also provide training for the Cancer

Support certificate • Look at possibility of individuals accessing the Expert

Patient Programme • Health professionals involved in the group should also

be offered the training available to the rest of the group

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

Long Term (3 – 5 years)

15. To maintain levels of user involvement at

established levels and aim to improve in areas where interest or involvement may have waned

• Difficult to foresee at present areas that interest may

decline

16. Secure continued funding from Network to

support user involvement in the future

• 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

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


TIMESCALE

AIMS

OBJECTIVES

17. Ongoing patient satisfaction surveys to

ascertain and maintain patient satisfaction in relation to treatment of site specific cancers

• 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

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

• Working with the self help and support groups will be

the key to maintaining patient and carer involvement for the network in the future


North Wales Cancer Network Summary

The North Wales Cancer Network includes the counties of Gwynedd, Isle of Anglesey, Conwy, Denbighshire, Wrexham and Flintshire The region’s population is approximately 663,000 21 (23%) living in 30% of the total area of the country22 The communities are predominantly rural, with areas of population concentration around Wrexham, Rhyl and Bangor.

Current provisions: User Carer Involvement - North Wales Cancer Network The Network is committed to actively involving patients and their carers in the planning, implementation and evaluation of cancer services. Primarily through the work of a Network Patient and Carer Involvement Group, the views of people affected by cancer are now being heard at many different levels in the development of cancer services in North Wales. This process has been given considerable momentum and focus through the support of the User Carer Involvement Project, commissioned by Macmillan Cancer Relief in 2003. In 2004 the Cancer Network established a Patient and Carer ‘Forum’ to provide a framework for opinions to be heard from a broad range of people in whichever way they feel comfortable. There are currently three main levels of involvement:

• Becoming a member of the Patient and Carer Liaison Group • Expressing views on cancer services in a one to one interview • Joining a database of users who are willing to give their views on service

development through surveys, focus groups etc

22 Office for National Statistics 2001 - http://www.statistics.gov.uk 23 http://www.wales.gov.uk 24 Triennial Report: Cancer Incidence, Mortality & Survival in Wales Welsh Cancer Intelligence & Surveillance Unit June 2005

North Wales Cancer Network Statistics Population22 Area23 Mean No. of Cancer

Incidences/annum24 Gwynedd 116,838 2,548 km2 658.3 Isle of Anglesey 66,828 714 km2 389.6 Conwy 109,597 1,130 km2 737.3 Denbighshire 93,092 838 km2 567.1 Wrexham 128,477 504 km2 631.2 Flintshire 148,565 438 km2 697.7

Total (as percentage in Wales) 663,397 (23%) 6,172 km2 (30%) 3681.2 (25%)


1. The Patient and Carer Liaison Group:

The Patient and Carer Liaison Group at present represents the hub of user involvement within the North Wales Cancer Network. The Group was originally formed in 1999 as a patient advisory group for the design and development of the North Wales Cancer Treatment Centre. In 2002 it was affiliated to the Cancer Network and became involved in the wider cancer agenda. It currently has approximately 20 patient and carer members, with representation from all three Trusts within the Network. Meetings take place at least once every two months and are also attended by health professionals from across North Wales. The Group aims to represent the voice of service users in North Wales and acts as a source of advice to the Network on patient and carer issues. It is proud of the positive working relationship, which has developed between users and staff. The achievements of the Group are summarised below:

• User representation established on:

a) Network Advisory Board b) Cancer Unit Management Committees c) Trust Cancer Partnership Groups d) Nine Site Specific Network Groups (Disease Orientated Networks) e) Oncology Network Group f) Conwy and Denbighshire Chemotherapy Group g) Patient Information Group

• Proposal of new local guideline regarding support of patients and carers at

diagnosis • Audit of hospital transport for cancer patients • Involvement in the development of Patient Information Folder • Feedback on patient information leaflets • Input into design of Patient Satisfaction Surveys • Feedback on design of website for Wales Cancer Trials Network • Involvement in ‘Breaking Bad News’ training for staff • Received two days CancerVOICES training (October 2004)

2. One-to-One Interviews: Interviews with patients and carers who have responded to leaflets and posters provide a valuable insight into their experiences of the cancer journey. Issues arising from these interviews are taken forward to the Patient and Carer Liaison Group where appropriate. 3. Database of Users: A database is being established of users who wish to be involved in questionnaires/surveys and focus groups.


TIMESCALE

AIMS

OBJECTIVES

Short Term (1 year)

1. Strengthen the role of the Patient and Carer

Liaison Group (PCLG)

• Support the Patient Carer Liaison Group in drawing up

a clear mission statement and action plan with achievable targets

• Ensure that members of the Patient Carer Liaison Group are well informed of developments and challenges within the Network – training days to be organised by Network Team

• Maintain and strengthen links with health professionals, ensuring representation from across the Network

• Encourage opportunities to share good practice and learn from other groups e.g. Macmillan Regional Conference, links with Northern Ireland Cancer Network

• Use the training offered by Macmillan and CancerVOICES e.g. developing good practice, training for Chair

2. Increase awareness of opportunities for user involvement amongst patients, carers and health professionals

• Circulate new leaflets and posters, include in patient

information folders • Make use of the Press, local radio, voluntary services to

publicise Patient and Carer Forum. • Maintain and develop links with self help and support

groups • Develop contacts with hospices and drop-in centres • Strengthen links with Public and Patient Involvement

Forums in Trusts and Local Health Boards


TIMESCALE

AIMS

OBJECTIVES

3. Maintain and support user representation on

advisory and planning groups both within and outside the Network

• Seek out appropriate user representatives as requested

e.g. Benefits Advice team, Macmillan User Reference Group

• Ensure that user representatives are well supported e.g. Macmillan training programme for site specific group reps., mentors, pre-briefing sessions

• Introduce a regular ‘ user view’ slot on the Agenda of Network Groups to ensure that there is an opportunity for user concerns to be voiced

4. Ensure that other methods of involving users e.g. ‘virtual groups’, are meaningful and effective

• Include members of the database in consultative

processes e.g. focus groups, surveys

5. Advertise achievements of Patient and Carer

Forum

• A poster showing the ways in which users have been

involved • Publish a bulletin/newsletter for the Patient and Carer

Forum

6. Secure short term funding

• Submit bid for Macmillan grant for Network partnership

Groups


TIMESCALE

AIMS

OBJECTIVES

Medium Term (1 - 2 years)

7. Set up and empower local User Groups

• Work in partnership with Trust cancer specialists to set

up local user groups that will be representative of patient and carer experience in the North East and North West Wales regions.

• Support local groups using resources offered by Macmillan and CancerVOICES – e.g. promoting good practice, CancerVOICES training, drawing up an action plan

• Build upon links between the local groups and the Patient and Carer Liaison Group

8. Support specialist staff to set up user panels • Links already established with the Cancer Trials Network

and the Endoscopy Unit in North West Wales. Identify users and promote consultation with staff to consider needs and expectations

9. Create links between the locality groups and the Patient and Carer Liaison Group

• Invite representatives from the local groups to attend

the Patient Carer Liaison Group/a Forum of Group chairs?

• Identify effective lines of communication to ensure that user concerns are heard.


TIMESCALE

AIMS

OBJECTIVES

10. Seek user views which are representative of all

aspects of the patient experience

• Strive to involve users who have only had experience

of surgery and may not benefit from the support given in the oncology setting

• Address the experience of patients in the primary care setting – involve GPs and Macmillan nurses

• Establish links with hospices • Design a simple ‘while you wait’ comment card to be

displayed in appropriate hospital waiting areas/cafes

11. Provide equal opportunities for everybody

affected by cancer to become involved

• Seek advice from Macmillan and local community

groups in involving patients from black, minority ethnic groups

• Address the needs of patients in poorly resourced areas of North Wales

Long Term (3 – 5 years)

12. Evaluate the impact of user involvement on

cancer services

• Consult with research/academic institutions to collate

and present evidence for the efficacy of the methods for user involvement

13. Secure long term funding to support user involvement

• Put together costed plan to maintain and develop user

involvement • Use evidence base to bid for core funding


All-Wales The Cancer Services Co-ordinating Group (CSCG) is the national body that advise the Welsh Assembly Government on policy and services relating to cancer, with the cancer networks in Wales linking directly in to the Cancer Services Co-ordinating Group structures. With this in mind, it would therefore be ideal for all parties if the user group at the Cancer Services Co-ordinating Group were the output at national level for user involvement in the networks:

Locality Group

Regional Group

Locality Group

Site-Specific Group

Regional Group

Locality Group

Site-Specific Group

Locality Group Regional

Group

Site-Specific Group

Locality Group

Locality Group

CSCG National Group


User involvement for cancer services in Wales would therefore have a three tier structure, which would ensure that users views are integrated at all levels of cancer services throughout Wales: Support Costs Maintaining effective user involvement in cancer services will depend upon the continued employment of a user involvement lead in each of the Networks. The table below shows the current and recommended establishment for the project: Pay

Current Establishment Recommended Establishment Network Title W.T.E. £ Title W.T.E. £ South West

Network Facilitator

0.6 £15,000 User Involvement Lead

1.0 £21,448 - £30,247 (Agenda for change Band 6 or equivalent)

North Network Facilitator



South East

Network Facilitator



Non Pay

Current Establishment Recommended Establishment Network £ Network £

South West £5,000 South West £7,500 North £5,000 North £7,500 South East £5,000 South East £7,500 Note: Non-pay expenses cover travel and subsistence allowance for facilitators and service user, as well as all other costs such as printing and stationery.

TOTAL ≈ £86,844 - £113,241 (Dependent on salary)

National Level Regional

Level Local Level


The Future The development of User Involvement in Cancer services in Wales is still in its infancy. The groundwork is still being established so that User Involvement can become embedded in the work of the Networks and the organisations that provide cancer services, both statutory and voluntary throughout Wales. It is not something that will become established overnight. It is important the development of User Involvement is made in such a way as to be acceptable to both patients and service providers. If they are to work in partnership then these partnerships require support and nurturing. It will involve a culture change within the NHS, but this is a change that has already begun to happen. User Involvement in general is becoming increasingly part of the general ethos of the NHS and should be encouraged and allowed to develop. The individual diagnosed with cancer can provide a unique insight into how we as health care providers deliver our services and how they could be developed in the future. Without User Involvement we can only second-guess what we think patients need and want in terms of how they are diagnosed, treated and supported. What we think they need or regard as a priority may be way off the mark. It may be that by making small changes at point of service delivery that makes all the difference between a “good” patient experience and one that leaves the patient and their families feeling let down by the system and dissatisfied with the care they received. It is important to emphasise that the establishment of User Involvement groups must not be regarded as an extension of the complaints and grievance procedures. The groups are not being established as a means to get individual complaints addressed. There are alternative avenues to take care of complaints. The ethos behind the User Involvement groups is to address issues that, having been experienced by individuals, can be used to benefit all users of the service, both now and in the future. These issues can and should involve those of a negative and positive nature. Sharing good practice will benefit both users and deliverers alike. By striving to achieve positive regard for the User Involvement groups from all quarters we can look forward to a pro-active partnership working well into the future. Recommendations 1. User carer involvement is not a passing phase and the strategy recommends that permanent funding is made available to support the work within the networks to ensure that this vital work is continued. Funding for this essential work should come from the Welsh Assembly Government as part of the core function in cancer networks. 2. Awareness is essential to the success of user involvement and awareness sessions and training needs to be established nationally and implemented at all levels.


3. The Welsh Assembly Government are supporting the way forward with clinical networks; however the profile of networks needs to be made greater for healthcare professionals and the public. V:\Service Networks\Cancernet\SWWCN 05\User Involvement\reports\Strategy - Final 211105.doc

Reference: Popham G, Evans P, Eleri G. (2005) Welsh Cancer Networks: Strategy for User & Carer Involvement.

Welsh Cancer Networks: Strategy for User & Carer Involvement

Documents

Welsh Cancer Networks: Strategy for User & Carer Involvement · ‘User/Carer Involvement’ is defined as the active participation of people affected by cancer in the policy development,