National Assembly for Wales

Name of respondent:

Cath Lindley

Are you responding on behalf of an organisation?

Yes

If so please give the name

Macmillan Cancer Support

Address:

33 High Street,
Cowbridge,
Vale of Glamorgan,
CF71 7AE

Telephone number:

01446 775679

Would you be willing to give oral evidence to the Committee?

Yes

Patients tell us they want a seamless provision of health and social care service yet the reality is that care is fragmented and uncoordinated within NHS and across health/social care divide. An electronic patient record system which enables health professionals to track where patients are in the system, which department is currently treating them, etc. could potentially aid co-ordination of care. However, while IT can support more effective tracking and co-ordination, the question of 'who does the co-ordination?’ still needs to be answered. Patients tell us that they want a single point of contact throughout their patient journey and the NICE supportive and palliative care guidance recommends that patients should be allocated a key worker while undergoing treatment. However, while different health professionals play a partial co-ordination, signposting or navigation role in specific phases of the patient journey, the reality is still that there are unnecessary delays caused by different NHS departments not talking to each other Macmillan recommends that the Assembly should review existing models and tools - including IT tools - which enable better co-ordination with a view to developing a standardised IT-enabled co-ordination of care model in cancer services.

We are aware that initiatives are underway in Wales to address the electronic patient record, and access to patient records for health and other professionals through the Informing Healthcare initiative. We would like to see cancer included as a specific target within this programme, including palliative care.

Better co-ordination of care between NHS departments and social care providers will reduce unnecessary in-patient bed days and, while patients are undergoing diagnostic checks, will also help tackle improve earlier detection of cancer. But, better co-ordination will also improve the quality of the patient experience. Patients need information about cancer, treatments, side effects and sources of social, practical, emotional, physical and financial support. Potentially IT decision-support software could be used to support the assessment of psychosocial needs and refer patients to relevant services and sources of help.

Wales has great potential to benefit from advance in telemedicine. We are aware of progress in this area at Bronglys hospital. We would urge the Welsh Assembly to support the piloting ad resourcing of this valuable way of providing services in rural areas.

Response

The evidence base for current and future palliative care policy and practice is weak. The National Cancer Research Institute (NCRI) strategic analysis published in 2002 found that only 4% of total expenditure on cancer research in the UK is on palliative care. The NICE supportive and palliative care guidance recommends extending the evidence-base for palliative care. In June 2006 the NCRI announced that two grants have been awarded from a programme of nearly £5 million over 5 years to boost research into supportive and palliative care for British cancer patients. The funding will aim to increase research capacity, create infrastructure, facilitate collaboration between researchers, and develop research tools. In addition to the two major awards of around £1.9million each, which have been awarded to two large collaborations of researchers from universities and health care settings across England and Scotland, a sum of £900,000 has been made available for a Capacity Building Grant Scheme to link in isolated or new investigators to broaden the work of the two funded collaborative groups, and to develop a UK-wide network of researchers for the future. The first round of competition for this scheme will be assessed in September this year. There are a number of researcher teams in supportive and palliative care in Wales and they should be strongly encouraged to apply to this scheme and to look to form collaborations with the two established groups.

In addition to the focus on drugs and treatment in relation to best practice, we would urge the Assembly Government to consider the wide issue of best practice in cancer care/support.

Response

Effective commissioning requires an assessment of needs within in the cancer population and Macmillan strongly believes that patients and carers should have a voice in the commissioning process. People affected by cancer are, through representation in cancer network structures, already having a say in the delivery and configuration of cancer services. Therefore extending the patient voice to commissioning itself is a natural extension of the patient involvement agenda.

It is our view that cancer commissioning in Wales is unclear at the moment, including the role of cancer networks. We would have thought that the cancer networks were in an ideal position to co-ordinate the commissioning process in their areas. We are also concerned about the degree of expertise at local health board level in relation to commissioning cancer services.

The commissioning of large pieces of equipment appears to be lengthy and complicated. We understand that commissioning linear accelerators in Wales has to be approved by the Assembly Government and appears to take some time and possibly unnecessary bureaucracy. Would it be possible to have a plan for expensive equipment which had a budget allocated to it with cancer networks signing off requests for new equipment and replacements within the agreed plan and budget?

Response

Response

Macmillan does not have a view on this question but we think that the NHS in Wales needs to strike the right balance between expenditure on cancer drugs and expenditure on care. As a new generation of expensive cancer drugs, such as Herceptin and new oral chemotherapy agents, are due to come onto the market, it is vital that the NHS in Wales takes action to ensure that health boards budgets are not swallowed up on drugs expenditure and that adequate resources are directed towards improving the quality of cancer care and support.

We are concerned about the adequate provision of major cancer equipment in Wales specifically PET Scanners and Linear Accelerators.

Response

There are currently 10 Macmillan specialist posts in Wales which are at risk or have already been affected in some way by the current financial crisis within the NHS. Two of these posts have been frozen already and a further four are at risk of being frozen. Macmillan funds and develops specialist posts, such as clinical nurse specialists and other specialist health and social care posts, because there is a clear evidence that specialisation improves patient outcomes. We provide initial pump-prime funding for specialist posts, typically for 3 years, on the condition that the NHS will 'pick up’ this funding thereafter. However, we are very concerned that Macmillan’s investment is being jeopardised and that health trusts may be reneging on funding commitments.

As a voluntary organisation we are aware of the existence of the Welsh Assembly’s Voluntary Sector Scheme. We would like to have assurance that the guidelines set out in the Scheme, particularly around consultation with the sector are being implemented.

Response

Response

Response

Although there have been improvements in cancer services, such as the establishment of cancer networks and patient involvement structures, services are still not sufficient patient-centred. Patients need information and support throughout the cancer journey and people affected by cancer need a stronger voice in the design and delivery of cancer services.

Patient involvement. Although the Welsh Assembly funds generic patient involvement structures there is no assembly funding for cancer-specific patient involvement. The NICE supportive and palliative care guidance recommends that 'Cancer Networks should establish and support Partnership Groups involving patients, carers and local health and social care professionals. They should take their views into account when planning services’. The evidence from a joint Macmillan and Department of Health evaluation of patient involvement partnership groups in English cancer networks demonstrates that the partnership group model leads to service improvements in information, communication of bad news, transportation, parking, waiting times and the design of new buildings. Macmillan currently is currently providing short-term funding for patient involvement projects in the 3 cancer networks until 2006/2007. However the long-term sustainability of user involvement in cancer services is in jeopardy unless the Assembly commits long-term funding to these projects. We would like to see the Assembly develop a clear strategy, with funding attached, for supporting patient involvement in cancer services.

Patients should also be given a greater say in everyday decisions about their treatment. A recent Picker Institute report Engaging Patient in their Healthcare found that the UK was performing poorly in comparison with other countries when it comes to involving individual patients in their own healthcare. Patient involvement in healthcare covers a range of measures including better communication by doctors, shared patient/doctor decision making in prescribing, and support for self care and self-management. While not every patient will want the same degree of involvement, patients should be offered the opportunity to engage more actively in healthcare decision making where this is possible.

As well as having a say in the design and delivery of cancer services, the patient experience should also be central to assessing and measuring progress in service improvement. Macmillan would like to see a baseline cancer patient survey, repeated on a regular basis, which measures all aspects of the patient experience in Wales. This would not just measure patients’ experiences of clinical episodes but would also cover broader issues such as whether patients’ information, financial, transport and emotional needs were addressed. Patients and carers should be involved in the design of the survey in order to ensure that the right questions are asked.

Information. Patients need specific types of information at different points in the cancer journey. Provision of information and referral to specialist sources of advice therefore needs to be built into care pathways. Patients need advice about cancer, cancer treatments and its side effects, and about sources of psychosocial support and specialist sources of advice and advocacy (e.g. benefit advice, debt counselling, housing advice etc.). Information should be provided in a range of formats and patients need support to help them interpret written information.

The financial effects of cancer. Macmillan’s research shows that cancer patients, particularly those of working age, frequently experience both a drop in income and at the same time incur extra costs (e.g. travel, parking, prescription charges, special diets, wigs and clothing, higher heating bills, etc). In our Cancer Costs research, published in June 2006, it suggests that 91% of cancer patients’ households suffer loss of income and/or increased costs as a direct result of cancer.

Other evidence also shows that patients are not receiving advice about existing welfare benefits. For example, 55% of Welsh cancer patients in a recent Macmillan survey said they received no advice about welfare benefits while 64% of UK patients who incurred travel costs had not been informed about the Hospital Travel Costs Scheme (HTCS). Macmillan wants all cancer patients to be offered specialist benefit advice at diagnosis and at key points thereafter in the patient journey. Effective referrals mechanisms need to be built into care pathways to ensure that patients get the advice they need at the time they need it.

The prohibitive costs of patient travel and parking also need to be addressed urgently. Macmillan’s research shows that 89% of hospitals in Wales now charge patients for parking and that cancer patients in Wales are spending on average £229 on travel and parking while undergoing treatment. Macmillan wants cancer patients to have their travel costs reimbursed through HTCS without a means-test, for hospitals to exempt cancer patients from parking charges and for the HTCS to be properly publicised.

Supportive and palliative care. The NHS has traditionally been too focused on treating the disease rather than addressing the psychosocial needs of the patient. The NICE supportive and palliative care guidance provides a comprehensive framework for ensuring that the supportive care needs of patients are addressed. However, the NHS in Wales must take a more proactive role in monitoring and driving implementation of the guidance. Macmillan would like to see the Cancer Services Co-ordinating group working in collaboration with each cancer network, carry out assessment of supportive and palliative care provision in Wales and draw up network action plans with clear milestones for implementing the NICE guidance. Ideally we would like to see an implementation strategy for the NICE supportive and palliative care guidance as a core component of a cancer plan for Wales.

We are not aware of the actions taken as a result of the Tebbit Review of Palliative Care Services in Wales.

We are concerned that palliative care is not a feature of Designed for Life, and would ask the Welsh Assembly to produce a strategy for palliative care in Wales as part of an overarching cancer strategy or plan.

Carer’s support. The Carers Strategy for Wales proposed that GPs should play a more proactive role in identifying carers and provide information about their rights and carers’ services. However, as cancer patients often have minimal contact with their GP during their active cancer treatment, it is vital that secondary health professionals also play a role in identifying and providing information to carers. We would like to see each cancer network appoint a carer’s lead and develop a strategy for identifying carers and advising about their carers’ rights and services.

A cancer strategy for Wales. Many of the issues highlighted in our response, such as the lack of a patient involvement strategy, are indicative of the broader absence of any strategic direction for cancer services. Macmillan would therefore like to see the Assembly develop a long-term strategy or cancer plan for Wales in order to drive forward the modernisation of cancer services. The NHS Cancer Plan for England has been instrumental in accelerating the modernisation process and reducing delays in accessing treatment. Macmillan would like to see a similar strategic plan for Wales with ringfenced funding and performance targets against which to measure progress.

Please find a copy of our current consultation manifesto for the Welsh Assembly Elections for as supplementary information.