APPENDIX 11
Memorandum by the College of Occupational
Therapists (PC 11)
1. INTRODUCTION
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.
TERMS OF
REFERENCE
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
REFERENCES
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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