Select Committee on Health Written Evidence


Memorandum by the College of Occupational Therapists (PC 11)


  1.1  The College of Occupational Therapists (COT) is pleased to provide a written submission as occupational therapists are key members of the NHS and Social Care services concerned with providing care and services for those who require palliative care.

  1.2  The COT represents over 25,000 occupational therapists that are either working or studying across the United Kingdom. The College also supports a number of support workers who are known as associate members. The College of Occupational Therapists Specialist Section in HIV/AIDS, Oncology and Palliative Care (HOPE) has assisted this written submission. Members of HOPE work with individuals to provide lifestyle management, energy conservation, and assessments which will include provision of equipment to enable optimum independence or in the use of functional activities for the treatment of physical, psychological and emotional dysfunction. Occupational therapists also work within palliative day care facilities facilitating a therapeutic programme of activities.

  1.3  Occupational Therapists are regulated by the Health Professions Council, and work with individuals of all ages with a wide range of occupational problems resulting from physical, mental, social or developmental difficulties. The philosophy of occupation therapy is founded on the concept of occupation as a crucial element of health and well-being.


  The Committee will inquire into the provision of hospice and palliative care by the NHS and by independent services, including the related support services of local authorities and other agencies for both adults and children. The inquiry will examine the extent to which the needs and wishes of patients of different ages are taken into account, including their care choices, ethnicity, cultural and spiritual beliefs. It will address the financing, governance, staffing, locations and quality of palliative care.

1.  Issues of choice in the provision, location and timeliness of palliative care services, including support to people in their own homes

  1.1  People who are dying express a strong preference to be cared for in their own homes1. While the vital role of occupational therapists in supporting patients and carers in their own homes is recognised2, there is considerable regional variation in provision of, and access to, occupational therapy services.

1.2.  Patients do not normally self-refer to occupational therapy services. Referrals are made by members of the multi-professional team. The role and remit of occupational therapy is not well understood, and thus patients may not have access to a necessary service.

  1.3  Managers and policy makers do not always understand the contribution of occupational therapy, and there is some evidence that current standards of provision are variable. A survey carried out by HOPE (the College of Occupational Therapists' Specialist Section in HIV/AIDS, Oncology and Palliative Care) in 2001 showed that only 14% of specialist palliative care services employed more than one full-time occupational therapist.

2.  Equity in the distribution of provision, both geographical and between different age group

  2.1  In health and social services, there are differences between the services provided for people under 65, and those over 65. While this distinction is not normally made in the case of specialist palliative care services, it nevertheless affects delivery of services to palliative care patients who may, for example, need equipment accessed through health or social services budgets.

  2.2. While we have anecdotal evidence from occupational therapists nationally regarding the wide variation in policy and procedures, and difficulties this poses in the provision of equipment (including star lifts for short-term use) and wheelchairs to patients, we do not have the means and resources to collect and analyse this data in a way that could lead to the systematic improvement of equity of access.

3.  Communication between clinicians and patients; the balance between people's wishes and those of carers, families and friends; the extent to which service provision meets the needs of different cultures and beliefs

  3.1  Good communication skills and sensitivity are key requirements in balancing the different—and sometimes opposing—wishes of patients and carers. Occupational therapists have a key role in negotiating with families the practical and emotional considerations in caring for a dying person at home. While occupational therapists have excellent communication skills in general, access to palliative care-specific communication skill is required; at present, this access is largely serendipitous.

4.  Support services including domiciliary support and personal care

  4.1  Palliative care patients and their families will require access to a range of occupational therapy services, from specialist palliative care to generalist services, which would include social services, and community rehabilitation services. At present, mechanisms for ensuring effective inter-agency communication often depend on local goodwill.

  4.2  It is vital that Cancer Networks take seriously the need for Allied Health Professional (AHP) Leads who will ensure that services are co-ordinated and information is effectively shared between agencies.

5.  Quality of services and quality assurance

  5.1  As has been stated earlier (2.2), we are unable to offer systematic evidence of the provision of occupational therapy services for palliative care patients nationally. This is a problem that needs to be urgently addressed: structures and mechanisms for collecting and evaluating such evidence do not exist at present. Without this data, it is impossible to make the specific recommendations that would be required to ensure that services provided are of the best possible quality.

  5.2  In common with other outcomes in palliative care, occupational therapy outcomes are difficult to measure. Patients do not make the functional gains that general rehabilitation outcome measures are designed to demonstrate. This again means that data on the effectiveness and quality of services is difficult to collect.

6.  Extent to which services meet the needs of different age groups and different service users

  6.1  Points made above, in relation to the lack of available data which would enable an evaluation of the extent to which services meet the needs of different age groups and different service users, are relevant here (2.2, 5.1 and 5.2).

  6.2  The NICE guidance2 rightly emphasises the need for service users to contribute to plans made for service provision. While occupational therapists routinely practice in a patient-centred way that would take into account patients' and carers' individual preferences, mechanisms are needed for including service users in planning occupational therapy services at Cancer Network level, and nationally.

7.  Governance of charitable providers, standards of organisation, links to the NHS and specialist services

8.  Workforce issues including the supply and retention of staff and the quality and adequacy of training programmes

  8.1  All occupational therapists will have some training in palliative care at undergraduate level, but the content and amount of this varies greatly between different educational institutions.

  8.2  There are no formal, occupational therapy-specific postgraduate programmes. Occupational therapists can, and do, access multi-professional courses. This type of multi-professional training is of immense value in palliative care, but while medical and nursing colleagues consistently lead it, opportunities for occupational therapists to lead in the education and research agenda remain limited.

  8.3  In contrast to nurses, who increasingly require a specific qualification in palliative care (a degree or university diploma), in order to practice at a specialist level (for example, a Clinical Nurse Specialist post), no such requirement currently exists for occupational therapists.

  8.4  The majority of training undertaken by occupational therapists working with palliative care patients is through locally organised, unfunded "study day" events.

  8.5  Occupational therapists working in specialist palliative care services generally report high levels of job satisfaction in relation to their clinical work. However, the majority of these therapists work "single-handedly" as the only occupational therapy member of a multi-professional team, and people in other disciplines often manage them. While this in itself is not a concern, it does need to be recognised. Care needs to be taken that issues relating to occupational therapy service provision are adequately represented in Cancer Networks, and at those levels where decisions are taken about policy and strategy, and education and workforce requirements.

9.  Financing, including the adequacy of NHS and charitable funding and their respective contributions and boundaries

10.  The impact and effectiveness of Government policy including the National Service Frameworks, the Cancer Plan and NICE recommendations

  10.1  Occupational therapists were first included as specific members of the multi-professional team in the Cancer Plan. Anecdotal evidence would indicate that, since the publication of that document, there has been a growth in specialist occupational therapy posts, as services seek to implement the standards set out in the Cancer Plan. There is interest in the development of Occupational Therapy Consultant posts in palliative care, but not, as yet, any commitment to funding these posts.

  10.2  With the publication of the NICE guidance in March 2004, it will be important to evaluate the impact that this has on service provision. The present difficulties encountered in establishing a baseline for occupational therapy services in palliative care, and evaluating and improving these services need to be addressed as a matter or urgency so that we are able to ensure that there is equity of access for patients and carers to the best possible quality of occupational therapy services.

  11.  In conclusion the College of Occupational Therapists would request the opportunity to provide oral evidence to the Select Committee


  1.  National Council for Hospice and Specialist Palliative Care Services (2003) Priorities and preferences for end of life care in England, Wales and Scotland.

  2.  National Institute for Clinical Excellence (2003) Draft guidance on cancer services: improving supportive and palliative care adults with cancer.

February 2004

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Prepared 26 July 2004