National Assembly for Wales

Health and Social Services Committee

Review of Cancer Services for the People of Wales

Business | NAFW

Name of respondent:Ruth Crowder

Are you responding on behalf of an organisation? Yes

If so please give the name College of Occupational Therapists

Address:P.O. Box 4156 Cardiff CF14 ORE

Telephone number: 029 2076 2834

Would you be willing to give oral evidence to the Committee?Yes, The College would be pleased to provide the expertise of a practitioner in this speciality. Alternatively, the Committee may wish to invite Welsh Therapies Advisory Committee to give evidence.

I am content for my evidence to be published XThis evidence is the view of the Professional Body and has been compiled in partnership with the specialist section for oncology and palliative care (HOPE)

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1	How can information technology be used more effectively to track and facilitate the patient’s journey?
Response	Investment in information technology that is compatible across health and social care would greatly assist. The electronic patient record will facilitate better support for service users as they move across agencies and services, from health to voluntary sector, to social care or vice versa. ISCO (the Information System for Clinical Organisations) is a valuable resource which enables all staff to access clinical and therapy notes of cancer patients. Complete open access to this system is available to hospitals and voluntary agencies, yet is not fully utilised, partly due to lack of access to IT. This is a real missed benefit to patients resulting in poor sharing of information and the potential of duplication of work, or worse, of areas being missed.
2	How effectively is research and good practice being integrated with service delivery? What can be done and by whom to improve this?
Response	The College of Occupational Therapists specialist section in oncology and palliative care (HOPE) is very active both across the UK, and within Wales. This gives the opportunity to share and disseminate good practice and research activity. Therapists are required to undertake continuing professional development activity in order to retain their registration to practice. Support from employers for attendance at learning and research opportunities needs to extend to ensure this requirement is met. Research activity outside the medical profession needs to be enhanced and greater finance needs to be made available for therapist, and other research. Occupational therapy research is limited: partly because of the lack of finance/ research funding: partly because of lack of specialists in post, expertise and time. The under-investment in therapist posts means that in most services occupational therapists are employed in small numbers; removing their time and expertise to carry out research denudes the service to a level that impacts on patient care. This can be improved by the funding of specialist, research posts such as consultant therapists and clinical specialists. Currently therapists carry heavy caseloads and where there are only one or two therapists in a service it is extremely difficult to participate in research unless funding is provided for backfill of their posts with new graduate or less experienced therapists.The Cancer Networks are not receiving adequate involvement from therapists to inform their work. Only one occupational therapist is a member of the Palliative Care Advisory Group, which supports the South East Wales Cancer Network. There needs to be more multi-professional engagement across Wales with communication and ideas flowing between Networks and services.
3	What are your views on the complexity of commissioning services? Is the process hampered by the involvement of the local health boards, cancer networks and Health Commission Wales? How could it simplified?
Response	There is a lack of coherence in commissioning services, with a poor overall picture of what is available. A substantial amount of commissioning is for direct medical diagnosis and treatment with little or no commissioning of the full package of rehabilitation and quality of life enhancing services. 'Living well with cancer’ and the recognition of cancer as a chronic condition are not yet reflected in the service commissioning. There is under-commissioning of therapy rehabilitation services:For example, Service users attending Velindre Regional Centre can only receive occupational therapy if they are in-patients. Outpatients, day patients and those receiving Radiotherapy or chemotherapy, attending specialist clinics or being cared for at home are not able to access occupational therapy services. This is because only in-patient occupational therapy has been commissioned and there are no resources to offer the whole package of care needed.Commissioners need better advice on how therapy can be provided. There is a tendency to commission a new project instead of expanding and enhancing the existing services, so too many projects are created. At times, these are "reinventing the wheel" as one member put it, when the skills being developed by other staff groups already exist in the workforce in the therapy service. Where therapist posts have not been commissioned in the new service, other staff groups have to take over those roles. This impacts on quality and raises issues of competence.
4	What evidence is there of the value of screening and immunisation?
Response	The College does not have a view on this.
5	What are the barriers to the NHS in Wales keeping abreast of, and responding to, developing technologies and therapies? How might these barriers be overcome?
Response	The barriers are: Lack of time: because therapy services are under-commissioned and staff cannot lift their eyes from the day-to-day load. Piecemeal provision of services. For example in Powys, Cancer services are commissioned from England; there are no specialist cancer therapy services and no access to voluntary agency therapy services. Service users are seen, on their return home, by generalist occupational therapists who may not be able to access specialists for support and advice, either generally or about the patient’s specific needs. This does not promote the best practice nor help developing therapies to disseminate These might be overcome by: Better access to therapy advice by the Cancer Networks. There needs to be recognition of the complexity of the needs of cancer patients and of the contribution that therapy services can make. This includes services which support and enhance high quality of life. Developing a culture of valuing CPD and professional activity for all staff groups to enhance knowledge and skills. Employers need to invest in staff and support education and development. Collaboration across specialist services and the generic services that patients rely on in their own locality. Investment in occupational, and other, therapy consultant posts would mean that these highly skilled staff could then offer an advisory resource and communication network to improve the quality of care across all parts of Wales.
6	How can the NHS and the voluntary sector work together more effectively to deliver services?
Response	Occupational therapy services have always tried to work effectively together. In South Wales, the occupational therapy service in Velindre is working to set up a collaborative OT team across Velindre and the Marie Curie Hospice to help provide continuity of care. It is hoped the team will reduce duplication, enhance good access to notes enabling information to be shared. Once funding is available, a rotation of staff between the services will develop. Patients can then experience a seamless flow of support irrespective of their location or service provider. Timely equipment provision can make the difference for whether a person is able to return home. The Welsh Assembly Government investment in integrated equipment stores is welcomed and it is hoped that access will be available for voluntary sector therapists to support integrated care. Clear funding agreements, which recognise the specific difficulties that voluntary agencies have with use of money raised by voluntary contribution, need to be established.
7	How can the collection and use of data on where the terminally ill spend their last weeks or months be improved better to inform service provision for those people?
Response	The Integrated Care Pathway is now being used to gather data on last days. Services could be better informed by data gathered across health and social care. This would help identify how and where people are being cared for by social services and whether there is sufficient social care provision to support them. Therapists provide a key role in keeping people at home. Although general data on waiting times for therapies is not collected, specific data for people with cancer, and other terminal illness could show: whether referrals are made to therapists; waiting times for social care provision; allocation to social workers; meeting times for panels to approve care package finance, for example. This data would better inform service provision for people.
8	There are a number of issues around prescribing and the cost of drugs:
8(i)	What should be done and by whom to reduce continued prescribing of inappropriate drugs?
Response	There is growing evidence that the use of therapy, relaxation and creative techniques can help people with cancer to develop psychological strength, confidence and control, helps in pain management and reduces anxiety and depression [Reynolds, F. & Prior, S (2006) Creative Adventures and Flow in Art-Making: A Qualitative Study of Women Living with Cancer. British Journal of Occupational Therapy 69(6) pp255-262: Lerman, C. et al (1990) Effects of coping style and relaxation on cancer chemotherapy side effects and emotional responses. Cancer Nursing 13(5) pp308-315]. Greater provision of therapy services may impact on the drug provision in such areas.
8(ii)	Should people who are prepared to pay privately for drugs not available to them on the NHS, be able to do so without having to become private patients and having to pay for all their treatment?
Response	The College does not have a single view on this issue.
8(iii)	Do doctors, pharmacists and other health professionals have adequate access to independent advice and guidance on the prescribing of drugs?
Response	Occupational Therapists are not able to prescribe and the College does not have a view on this.
9	Are services centred on the patient, with service users consulted? If not what are the reasons for this and how patient involvement be improved?
Response	The intention is always that occupational therapists put patients at the centre of their practice. However, the way in which services are commissioned and the financial constraints will impact on the provision of equitable services and thus on the achievement of a truly patient centred service.

Additional Comments.One of the terms of reference is to review equality of provision and equity of access to the full range of high quality cancer services that meet the National Cancer Standards. The following comments on that issue could not easily be fitted into the above questions.Occupational therapy personnel are concerned that services are not available to all patients who need them.

• There are insufficient services to meet the needs of young people with cancer in Wales
• Occupational therapists are not able to meet all the needs of patients because of under-commissioning of services (see the Velindre example above in Q3). In Powys for example, cancer services are provided in England or in south Wales. There are no Macmillan therapy or hospice occupational therapists to support patients once they return. There is no outreach from these services for when the client returns home due to lack of commissioning so occupational therapists are reliant on referrals from these services and often these do not arrive early enough.
• Access to occupational therapy is dependent on where patients receive their care. Not all District General Hospitals have specialist occupational therapy for oncology and palliative care. Many patients see generalist occupational therapists, who not may have access to specialist advice and support and who are working to achieve safe discharge rather than being enabled to provide ongoing support. This pattern of services offers little continuity of care for patients and doesn’t enhance the development of practitioner expertise. There is poor access to specialist therapy services outside specialist centres, and poor access for generalist/ community therapists to get advice from specialists.
• The quality of life/ Living well with Cancer agenda needs greater investment in therapy in general and occupational therapy in particular for quality of life services.

Please find attached a copy of the College of Occupational Therapists guidance "Occupational Therapy Intervention in Cancer". A hard copy, with a copy of this response, will be posted separatelyIf the committee would like any further information please do not hesitate to contact the Policy Officer Wales, Ruth Crowder at the above address.