National Assembly for Wales
Health and Social Services Committee
Review of Cancer Services for the People of Wales
| Name of respondent:Mr Paul Miller, Chief ExecutiveContributors; Professor Tony Hazell, Trust Chair Dr Malcolm Adams, Consultant Clinical Oncologist & Trust Medical Director Baroness Prof Ilora Finlay, Professor of Palliative Medicine Prof Tim Maughan, Professor of Clinical Oncology Mrs Andrea Hague, Director Velindre Cancer Services Mrs Lisa Miller, General Manager, Velindre Cancer Services Mr Alun Lloyd, Director of Finance Mrs Georgina Galletly, Head of Planning & Corporate Development Dr Hilary Fielder, Director of Screening Services Ms Julie Rowlands, Specialist Palliative Care Nurse |
| Are you responding on behalf of an organisation?Yes |
| If so please give the name Velindre NHS Trust |
| Address:Velindre NHS Trust 2 Charnwood Court Parc Nantgarw CARDIFF CF15 7QZ |
| Telephone number:029 2031 6916 |
| Would you be willing to give oral evidence to the Committee?Yes |
| If the evidence you give below is your personal view, rather then that of an organisation, please state whether or not you are willing for your evidence to be published by putting a X in the appropriate box below: |
| I am content for my evidence to be publishedX |
| I am not content for my evidence to be published |
| 1 | How can information technology be used more effectively to track and facilitate the patient’s journey? |
| Response | The entry of clinical data in a single fully developed All Wales clinical data base e.g. CANISC must be made mandatory to ensure the availability of accurate outcome data and standards such as waiting time are accurately monitored. The databases need to be accessible to clinicians at all stages of the patient pathway and duplication of data entry into other databases avoided.Appropriate funding is needed to facilitate entry of quality validated data throughout the patient pathway. The database needs to be compatible with other relevant managerial data systems and for this reason should probably be adopted by Informing Health Care.Cancer Screening Services use a similar database (ISCO) for colposcopy assessments in cervical screening. The system is managed by the same ICT specialists as CANISC. The information has been used to audit patient management and is vital for failsafe processes in the care pathway. |
| 2 | How effectively is research and good practice being integrated with service delivery? What can be done and by whom to improve this? |
| Response | Maximising involvement in clinical trials is key to keeping practice up to date, improving care and integrating new treatment developments appropriately into service delivery.In Wales, the Wales Cancer Trials Network has played a key role in increasing recruitment into clinical trials.Clinicians need to be further encouraged to enter patients into clinical trials.The All Wales tumour groups under the aegis of the Cancer Services Coordinating Group are key to defining best practice and standards and should be able to regularly perform All Wales audits of treatment outcomes, morbidity of treatment and compliance with good practice standards.Such audits demand that clinical data be readily available and that all relevant clinicians are participating across all aspects of the treatment across trusts and all cancer networks.These All Wales tumour groups should also be more proactive in supporting research.Currently the Welsh Cancer Intelligence and Surveillance Unit (WCISU) is under utilised for monitoring changing cancer incidence and outcome of treatment. In palliative care, research is particularly hard to undertake as patients are often too ill to consent and the patient population is far from homogeneous. However much that is undertaken clinically to relieve symptoms is based only on accumulated practice experience. There are important opportunities to develop new research methodologies for this patient group so that new and more effective interventions can be developed for the intractable problems such as weakness and fatigue. Wales has some unique advantages - the population is relatively stable, there is a commitment to collaborative research from the consultants in palliative medicine across Wales and there are some new important trials being undertaken even though the infrastructure is not in place as yet due to lack of funding of palliative care research managers (North and South) for Wales. |
| 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 | The relative role of all the above is ill defined and there is inconsistency in cancer commissioning across Wales.Commissioners do not have adequate information on case mix and activity. Effective commissioning requires quality measurements of activity and complexity defined by tools such as HRGs which are defined by indicators.Commissioners frequently lack expertise as well as information.The quality of commissioning seems to have deteriorated since the introduction of LHBs as specialist commissioning expertise has been distributed thinly across a large number of commissioning organisations.Commissioning for cancer services needs to be organised on at least a regional basis and capital funding issues for expensive equipment need to planned on an All Wales basis.The cancer networks have not been enabled to enact their advice as trusts hold all the authority with respect to Consultant appointments. Mechanisms need to be developed to ensure that advice on service configuration is implemented.Commissioners are often confused between specialist palliative care services and those in the charitable sector that offer nursing and social care at a generalist level. The needs assessment undertaken by the National Council for Palliative Care should be a starting base for more effective commissioning. To date, commissioners have appeared reluctant to be firm about what they will and will not support. Block grants rather than full service level agreements have been awarded to some organisations and political pressures have been brought to bear by Trustees of some organisations to the detriment of others. The LHBs act at too local a level to have an overview and are not able to exert the difficult pressure on the charitable sector partners to alter practice to fit with the needs of an area. |
| 4 | What evidence is there of the value of screening and immunisation? |
| Response | a) Cervical CancerOrganised cervical screening programmes have been estimated to have reduced the mortality of cervical cancer by 80% (ref. Peto J, Gillham C, Fletcher O, Matthews FE. The Cervical Cancer Epidemic That Screening has Prevented in the UK, Lancet 364:249-256, 2004). However, the imminent availability of HPV vaccination promises further reduction in the morbidity and mortality HPV related disease if public vaccination is integrated with cervical screening in a planned way. Two highly effective prophylactic vaccines against the strains of human papilloma virus responsible for 70% of cervical cancer have completed late stage clinical trials and are likely to be licensed very shortly.These vaccines are likely to work best work if they are given to adolescents before they become infected with the human papilloma virus. Most women are exposed to the virus and successfully overcome infection with their natural immunity. In these older women vaccination may be beneficial to boost they natural immunity to prevent re-infection. For the present, cervical screening will need to continue unchanged but as the incidence of HPV disease is reduced by vaccination the screening programme will need to be modified.An HPV vaccination programme needs to be planned to ensure effective prevention with high acceptability for the vaccine without undermining the current cervical screening programme.(b) Breast CancerBreast Test Wales (BTW) was established in 1988 and is responsible for;· Providing the national breast screening programme throughout Wales;· The quality assurance of the programme;· Training staff to the standards required to deliver the programme;· Evaluating the benefits of the programme and carrying out research.BTW always meets or exceeds the programme standards for uptake and cancer detection. The National Health Service Breast Screening Programme (NHSBSP) Annual Review 2005 shows that Wales has the highest cancer detection rates and standardised ration in the UK for the year 2003/2004.The excellent overall performance was recently independently reviewed by Cancer Research UK. The case-control study showed that BTW has contributed to approximately a 25% reduction in mortality since 1991 (ref Fielder HM, Warwick J, Brook D, Gower-Thomas K, Cuzick J, Monypenny I, Duffy SW. A case-control study to estimate the impact on breast cancer death of the breast screening programme in Wales. Journal of Medical Screening. 11(4):194-8, 2004.) (c) Colo/rectal CancerIt has been proven that population based faecal occult blood screening with follow up colonoscopy for confirmed positives reduces deaths from colo/rectal cancer by earlier detection. There is a high level of late stage presentations in Wales at present (with resultant high palliative care cost implications). The faecal occult blood screening should be instituted as soon as possible, but ensuring the colonoscopy service is adequately staffed or resourced to deliver increased demand and ensuring a quality assured, adequately funded screening programme is established. |
| 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 | Implementing new technologies into good practice requires planned resources otherwise there is inevitable delay in implementation.Adequate review of new technologies and practice requires a large pool of expertise.Wales needs to be part of the NICE review process and avoid unnecessary duplication of expert review. Wales is too small to develop its own process and horizon planning is required to identify new developments in adequate time to enable resources and capacity planning requirements to be defined in a timely fashion.Wales needs to ensure that NICE holds to its more rapid review process. WAG needs to ensure that Wales does not repeatedly lag behind new technological developments by moving to more rapidly commissioning new technologies (eg PET-CT).In palliative care there are a few 'high cost’ drugs or technologies. However, the NICE process should be applied to Wales so that the minimum standards agreed for commissioning are adhered to in Wales. |
| 6 | How can the NHS and the voluntary sector work together more effectively to deliver services? |
| Response | There is already a major input from the voluntary and charity sector to support cancer services and palliative care in South East Wales. There are a large number of joint specialist cancer and palliative medicine nursing posts already being funded by charity. However, the funding of such posts is not made within a strategic framework and might benefit from an umbrella organisation e.g. WCVO in conjunction with the cancer networks to coordinate.If voluntary organisation and charities disappeared they would leave a deficit of least £ 2 m + for funding key professional support staff for Velindre Cancer Services alone.A clear commissioning intention would ensure that the charitable sector work more closely with the statutory sector and would also avoid developments arising on an ad hoc basis, with pressure then being put on NHS commissioners to fund the running costs. Clear strategic planning is needed to define what the NHS will fund and what is to be left to outside agencies. |
| 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 | It is important that data for the last weeks of life is collected and not only the last few days. Research suggests that most patients wish to die at home but in practice most patients die in hospital. However, where a person wishes to die may change depending on the length of their illness, their symptoms and their home and family circumstances. Statistics suggest that most people who die in hospital do so in the first week after admission (NHS Confederation 2005). This suggests that an acute event, exacerbation of symptoms or inability to cope with present situation necessitated admission to hospital. For those patients terminally ill at home who were admitted and died within a week, what was the prompt for admission? Did the patients or family change their mind in the face of new or worsening problems? Some of the patients may have been admitted appropriately for active treatment but there is likely to be a cohort of patients with terminal illness that could have been managed in an alternative setting if their potential deterioration was anticipated and pre-emptive care plans made. It is important to collect this data to help us identify where services could be introduced or refined to prevent hospital admission. In addition, if success at managing patients at home until the point of death is measured only by recording place of death, a disservice is done to the services that may have successfully managed patients in their own homes for weeks or months leading up to death. It is in these final weeks that patients may most benefit from being at home more that in the last few days of life when they are often oblivious to where they are. Many patients choose to remain in hospital because they hope for a better outcome and do not reach the stage where they accept they are dying.It is important to identify :-· Where patients state they would wish to die.· Whether this changes as illness progresses.· When patients are dying are the patient and family happy about where they are being cared for.· If a patient is admitted to hospital (or other inpatient/hospice unit) what prompted the admission? · Was the decision to admit taken by a professional or requested by the patient or family.· If patient/family request, why did they feel the need for admission?· How long had the patient been ill, what level of professional and social support had been required in the previous weeks and what had changed?· Was the patient/family happy with the care and support at home?· Was the patient/family happy with the decision to admit to hospital?· What, if anything could have been provided at home to prevent hospital admission?This information would guide us more accurately to what patients want and allow us to develop services to meet these needs. Sometimes surveys questioning where people want to die are undertaken with people who are more well and not at the dying stage and may lead to unrepresentative statistics that create unachievable targets. Asking the questions above to the patients and relatives who are actually living the experience will give us more accurate data.The question is who will collect it and where can it be stored and analysed? What is required is a centrally accessible database. Many palliative care teams in South East Wales use the ISCO system which may be able to support this initiative but this is not currently accessed by district nurses and other generalist staff. We are not aware of an existing system accessible to any professional caring for the patient in the last days of life. A form could be devised to complete and centrally collected and analysed. A similar initiative was used when the Integrated Care Pathway (ICP) for the last days of life was rolled out and audited. This was successfully managed and now has a large amount of Wales-wide data collected and is ongoing. As most healthcare professionals caring for patients in the last days of life in Wales will be familiar with the use of the ICP, the questions above or similar could be an 'add on’ to the ICP if agreed by the Wales collaborative Care Pathway group. In this way data could be collected for every patient put on the ICP. The data sheet could be posted to a central point for analysis as currently happens with the variance sheets from the ICP.Wider use of the Care Pathway at the end of life will allow data collection from the variance sheets and will highlight needs. With appropriate support, it should be possible to use this template to collect further data and undertake some follow-up studies to assess the adequacy of the service for patients without having to fund separate major projects.This, research and audit data collection can be linked to ensure that information is available to inform service commissioning and planning. |
| 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 needs to be appropriate audits of drug usage to verify compliance with good practice, standards and guidelines. Pharmacists are in the ideal position to perform these if the relevant information and professional time is available.The current system may prevent people from taking reasonable steps to improve their care when the NHS cannot afford to do so.Again, wider use of the care pathways will cut down on inappropriate prescribing at the end of life.Patients are often the most powerful group at initiating a review of drugs, by simply asking their doctor if they really still need to take all they are taking. A campaign to raise public awareness may help, such as 'ask your doctor’ - "Do I really need to take this?" |
| 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 | However the service is funded in the future it is essential that there is consistency of care irrespective of patient means.The NHS Act (1948) clearly sets out health service provision as free at the point of delivery and service users can chose to 'opt out’ of this system to access treatment in it’s entirety. Any reforms to this Act must ensure that NHS Wales has national policies over what is not funded. This cannot be left to be decided at a local level. |
| 8(iii) | Do doctors, pharmacists and other health professionals have adequate access to independent advice and guidance on the prescribing of drugs? |
| Response | It is essential that Wales be part of the NICE process to ensure that an adequate pool of independent expert advice is available for guidance on appropriate prescribing of drugs.Perhaps WAG could take a more pro-active role in negotiating with Pharmaceutical companies for Wales-wide contracts. This occurs in other European countries and helps to keep costs down.The Drugs and Therapeutics Bulletin was perhaps a little long winded at times, but independent advice is essential, otherwise it is only the pharmaceutical industry that will have the role of disseminating information. |
| 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 | Major steps have been taken to integrate the patient perspective into cancer services and palliative medicine with patient representatives now being an integral part of clinical governance, ethics and R&D committees.CHCs play a vital role in supporting the interest of the patient with trusts, commissioners and government and identifying deficiencies and gaps in the service.The vital role of patient involvement is now totally accepted, supported and encouraged by health professionals. |
