Health, Wellbeing and Local Government Committee
Committee Inquiry into Workforce Planning - Evidence from Wales Neurological Alliance
Purpose
1.1 This paper provides evidence from the Wales Neurological Alliance to the inquiry into Health and Social Care Workforce Planning carried out by the Health, Wellbeing and Local Government Committee of the National Assembly for Wales.
1.2 The Wales Neurological Alliance is a collaborative forum of 22 neurological charities and voluntary organisations. By working together members of the Alliance pursue the highest standard of health service and care for people living in Wales who are affected by a Neurological condition, their families and carers. Our membership includes: Alzheimer’s Society, Association of Spina Bifida and Hydrocephalus, British Polio Fellowship, Cerebra, Charcot-Marie-Tooth Association, Chartered Society of Physiotherapists, Epilepsy Action, Epilepsy Wales, Genetic Interest Group, Headway, Huntington’s Disease Association, Myasthenia Gravis Association, Motor Neurone Disease Association, Muscular Dystrophy Campaign, Myotonic Dystrophy Support Group, Mutiple Sclerosis Society, Parkinson’s Disease Society, Progressive Supranuclear Palsy Society, Stroke Association, Tourette’s Syndrome Association, Tuberous Sclerosis Association, Wales Association of ME & Chronic Fatigue Syndrome.
1.3 As a patient group we welcome the opportunity to provide evidence for this inquiry and to contribute to the development of effective workforce planning. Workforce planning has a key role in ensuring that patients and their families get the right help, treatment and care when they need it. This should mean at the right time in the most local venue possible from a health and social care service that has the professionals with the capacity, capability and confidence to deliver a 'world class health service’.
1.4 The Wales Neurological Alliance membership provides direct support to all those affected by neurological conditions, their families and carers. This is through voluntary work and also through direct service provision. Our membership is an important resource for those with neurological conditions and as such we are able to provide a clear voice on matters that will directly affect patient care and management. We have over the last few years proven to be a reliable and accurate conduit of the patient voice into health and social care policy development and we continue to be proud to do this on behalf of our members and their families.
1.5 This paper addresses the terms of reference for this inquiry and makes recommendations from the perspective of the Alliance membership. The Alliance does not have dedicated staffing to carry out its work. Rather, the membership work together contributing to the Alliance in addition to their contracted work (the day job). The Alliance does not have dedicated resources to assist in its work and it operates on a 'shoe-string’ budget.
1.6 In submitting evidence to the Inquiry the Alliance membership has been surveyed on the questions raised by the specific questions relating to the terms of reference. We have also included real life examples of how the effects of workforce planning are directly felt by patients, carers and families - those people who receive the care from the health and social services workforce.
Background
2.1 Neurological conditions are illnesses, diseases or injury to the body’s nervous system (brain, spinal cord, peripheral nerves across the body). Neurological conditions may be congenital (present from birth) or may present later in childhood or adulthood. They may be inherited or may be acquired (e.g. through injury); most are lifelong conditions. Many of these conditions mean that an affected individual will have a disability. These may be physical, mental or learning difficulties.
2.2 People with neurological conditions therefore, often have specific needs to manage their treatment and care from health, social and voluntary services. Some neurological conditions are progressive and the needs of affected individuals change over time. It is of paramount importance that affected people, their families and carers receive sufficient and appropriate care from the health and social care services to enable them to live their lives with health, comfort and dignity.
2.3 Prevalence figures for neurological conditions are not known for certain. A recent publication concluded that approximately 5.8% of the Welsh population - around 170,000 people are affected with neurological conditions1 2. Additionally, some conditions are more prevalent in the older members of society and as people live longer, it is likely that figures for neurological conditions will increase.
2.4 Workforce planning must be placed in the wider strategic context of Designed for Life, Fullfilled Lives, Supportive Communities and the Chronic Conditions Management Framework. It must also be shaped by planning for specific conditions and it is here that particular problems are experienced in neurological conditions. Services for people with neurological conditions in Wales are patchy. There is no long term strategy for the development of Neuroscience Services in Wales. By comparison, in England, the long-term conditions National Service Framework including Neuroscience Services, was published in 2005 and it now forms the required basis for the planning and development of neurological services. The Wales Neurological Alliance continues to campaign on this matter. Without a Strategic framework for services it is considered to be very difficult to develop any meaningful Workforce Plan. We ask that the Committee to this inquiry draws attention to this matter to ensure that effective workforce planning in Neurology is not thwarted as this will have direct negative consequences for patient care.
2.5 The process of Workforce Planning must also be centred on providing services for patients rather than through professional groupings. In particular, this is to ensure planning is carried out for conditions regardless of their prevalence rates. Some patients with rarer conditions do not have a specifically recognised service in existence for the necessary on-going management of their care. Often, clinicians are providing 'treatment by stealth’, out of area (across LHB boundaries) and some professionals provide this on a voluntary basis.
We understand that the issue of commissioning services is wider than the terms of reference for this inquiry, however it is a fundamental related issue and we wish to ask the committee of the vexing question: how can effective workforce planning be undertaken for an unrecognised service, despite the fact that there is clear and real clinical need for it by patients? It is critical that the needs of those with rarer conditions are factored into the development of an effective workforce planning process and do not fall through gaps.
Workforce Planning process
3.1 The Wales Neurological Alliance is aware that there has been some degree of workforce planning taking place in both the NHS and Social Care Sectors in Wales since the late 1980’s. However a survey of members of the Alliance undertaken recently has indicated that there was little or no knowledge of the workforce planning process and no member organisation had been directly involved.
3.2 It is understood that a new workforce planning system for the healthcare workforce has been set up. Again, none of the Alliance members recently surveyed were aware of the detail of the new system and there was no awareness of the Regional Workforce groups which have been set up to bring together local economies and facilitate workforce development across sectors.
3.3 We hope that every effort will be made to ensure that a whole range of voluntary organisations and patient representatives are engaged in the process locally, regionally and at an all Wales level. Several reasons support this:
3.4 As heath and social care service users, patients themselves know what is needed in relation to their management of care. They are able to high-light gaps in service delivery, to specify their needs, and additionally high-light what they do not need.
3.5 Many voluntary organisations provide health and social care services and these are in addition to the statutory services. It would therefore be logical to include such organisations in Workforce planning as it would encourage 'joined’up’ multi-agency co-working to help patients. Additionally, such organisations have a great deal of experience and expertise and statutory services would benefit from this resource.
3.6 The WNA in particular has considerable experience through its member groups of health services. The Alliance’s members are based throughout Wales and it also has strong partnerships with several local Neurological Alliances made up of patients and voluntary organisations. Not making use of these areas of expertise would be unfortunate and the absence of the patient voice on such developments would be disappointing. This expert resource would also require adequate compensation for time and effort as in a professional consultancy capacity.
3.7 The Alliance believes Workforce Planning should be undertaken on local, regional and national levels. This would assist in details about local communities around Wales as well as for assisting the more specialised, comparatively rarer conditions. For such rarer conditions, workforce planning could facilitate pan-Wales networks which would help planning for service delivery and also for on-going professional support, including training.
Workforce Information
4.1 The lack of involvement of Alliance members makes it difficult to comment on the quantity and quality of workforce information although patient experiences suggest this is currently far from optimal.
Planning for Long Term demands
5.1 It is critical that workforce planning is shaped by robust service planning and commissioning and the health and social care needs of the population. Information submitted by Alliance members highlights the fact that to date very little account seems to be taken of future demands for services and the workforce implications of this.
5.2 There is a real need to take account of people with Neurological Conditions in workforce planning in Wales. There has been no historical structure of support for people with neurological conditions. An effective pathway for neurological patients would allow for more effective workforce planning to begin. Unless neurology is given a stronger emphasis and development for commissioning, there will be a detrimental effect on workforce planning.
5.3 Care pathways are recognised to be important tools in developing services, and should also be used to assist with workforce planning where available and suitable. These pathways offer a 'joined-up thinking’ approach across primary, secondary and tertiary services, and involve multiple agencies.
5.4 Workforce planners must ensure that this process is not static but can work within today’s health and social care system - able to work with many different agencies across Wales. This includes working across primary, secondary and tertiary services to ensure a 'joined-up’ approach on delivering a workforce that centres on patient care.
5.5 There must be good communication between outside of Wales service providers and those within Wales. It is essential that patient care does not suffer because of different policies such as Foundation Trust status, or waiting time differences in Wales compared to England or due to England working with its National Service Framework standards - this also includes the different frameworks for workforce planning. It is important that the planning of commissioning and workforce development are addressed together to ensure that when patients receive specialist intervention at centres outside of Wales, then local support services such as on-going care and rehabilitation following the procedure are available, accessible and appropriate. An example of this may be for an individual living in Caernarfon undergoing neurosurgery in Liverpool or further; to ensure the best recovery from this operation, there may need to be a sufficient physiotherapy service available in the locality to help the patient.
5.6 Rehabilitation or secondary prevention services must also be addressed with adequate workforce planning. For many neurological conditions (and for chronic conditions), it is important to recognise that rehabilitation services do not mean simply 'getting better’ but rather they are maintaining health or preventing adverse deterioration through effective management of care as symptoms manifest.
5.7 Coupled to this is the dearth of 'rehabilitation’ services available for people with long-term or progressive conditions. Such individuals may never be rehabilitated so that they may have been before disease onset, but they do require long-term management of their symptoms as they manifest. Workforce planning needs to be effective in ensuring that services have the capacity to manage all those people that need care and treatment as without it, their quality of life - for the rest of their days - can be detrimentally affected. People with Motor Neurone Disease are examples of those who will not recover - but will get a better life if their symptoms are managed early and without delay.
5.8 As we have previously discussed, rarer conditions such as neuromuscular diseases - e.g. Duchenne Muscular Dystrophy often have smaller services that are not 'officially recognised’. This is often due to the fact that historically, these services began at a time when clinicians in the NHS (particularly those with a research interest) could develop services ad-hoc for their patients. This is no longer the case. Patients with such conditions are at considerable risk of losing the already 'shoe-string’ service they are receiving. A lack of Work Force Planning will always place significant extra strain on smaller services. In Summer 2008 the Neurologist with interest in muscle disease based at the University Hospital of Wales in Cardiff retires, and there is not likely to be a requirement for his replacement to have an interest in this area of neurology. Succession planning - particularly for specialist services - must be considered through workforce planning.
5.9 Workforce planning must also take account of other situations such as long term sick leave and maternity leave. Another similar situation is 'job freezing’ - when posts become vacant it is always easier for a Trust which is under financial pressure to not recruit. When Specialist Nurses in Multiple Sclerosis or Parkinson’s disease retire, go on maternity or are ill there is no evidence of intervention to fill these posts. Patient care is directly adversely affected. Currently the Huntington’s Disease Management Clinic for Wales at the University Hospital in Cardiff is at a stand-still due to a 'job freeze’. People who have HD are not able to access their annual management clinic - essential in helping them manage their condition. Additionally, Cardiff is the HD European clinical trial HQ and this is a tremendous blow for Cardiff University’s HD research team. This is an example of how ineffective workforce planning has a negative impact on patient care and on research and clinical trials programmes.
5.10 Workforce planning also needs to take account of transition services. Transition services are required when a patient reaches the age of 18 and can no longer access paediatric services. Rather they will need to continue their care pathway with adult services. In the past, patients with some conditions - particularly those which are inherited progressive conditions - may not have lived into adulthood. But as research findings are translated into therapy and care management, patients with certain progressive conditions such as spinal muscular atrophy (type II) and Pompe Disease may live longer. Workforce planning around developing transition services must be effective. People with conditions such as spina bifida and hydrocephalus are discharged from paediatric services on reaching the age of 18. They are not referred on to adult services (usually as there is no adult service in existence). At this time, affected individuals will only re-enter the health service following an acute emergency incident, often resulting in an overall deterioration in their health. As research and knowledge is translated to patient treatment and care resulting in people living longer, workforce planning must be able to catch up and provide the required work force in health and social care.
5.11 Workforce planning must provide the necessary framework to allow for training and continued professional development. These are important to ensure professionals in health and social care continue to provide high quality care and can also learn about new developments such as novel treatments and therapies which will facilitate the adoption of best practice into the health and care services and also maximising the effectiveness of translational research benefits to help patients.
5.12 Advantage should be taken of new technologies. Initiatives such as telemedicine and use of the Internet can assist in helping healthcare professionals learn new skills and expertise. They are useful in linking professional networks across the country, particularly those based in rural areas, or those dealing with comparatively rarer conditions which they themselves are unsure of how to co-ordinate and manage care.
5.13 Voluntary sector organisations also fund many posts within health and social care services. These are often short-term contracts, sometimes for 'pilot project’ services - allowing professionals to trial and evaluate potential new services into the main stream system. These posts are often for key workers linking health professional teams to patients and are invaluable resource for patients. Work force planning must be developed so that statutory services may make the most out of new initiatives that have a positive effect on patient management so that they may be commissioned and continued by the statutory services.
Health and social care working together
6.1 Health and social care services need to work together in a more holistic way and meet the patient’s and families needs more effectively For some conditions, professionals working with a patient may be duplicated as they are from different organisations. A frequent occurrence is for people with Motor Neurone Disease being assigned occupational therapists from a hospital (after diagnosis) social services (adaptations) and a third one for palliative services as the disease progresses. Individuals are confused as to which OT has responsibility for which issue.
6.2 Allied health professionals are increasingly working to 'episodes of care’ with cases being closed without ongoing monitoring. This causes difficulties in progressive degenerative diseases where ongoing intervention (e.g. from occupational therapists) may be required as this can have a negative impact to quality of life the affected individual, family and carers.
6.3 Voluntary organisations also provide professional services for patients and their families as 'family care officers’ - these are usually professionals bridging the social and health care areas and providing additional support. Organisations providing this service are able to view patients’ complete care and would have good information to facilitate WFP of the statutory services and should also be considered.
6.4 A recent survey of patients with neurological conditions in North Wales highlighted the fact that 67% sought information, advice and support from the Voluntary Sector. Most people also stated that they gained most support from local voluntary support groups. This highlights the reliance of people on the Voluntary Sector and the potential which voluntary groups could contribute to the Workforce Planning process. Workforce planning must work closely with the voluntary sector so that the services from both statutory and voluntary organisations may work in parallel.
Overall Staffing levels
7.1 At present, there is a shortfall of healthcare professionals working within neuroscience services within Wales. We understand that this is largely due to commissioning of services. We urge Committee members to investigate these areas as this inquiry into improving workforce planning will be detrimentally affected.
7.2 Medics. Number of Consultant Neurologists per head of population in Wales (Approx 1:214,000) c.f Uk (1:150,000) and ABN recommendation of at least 1;100,000. There are no Consultant Neurologists based in North Wales. Specialist services for neuroscience are provided from England.
7.3 Allied health professionals. There is an overall shortage of trained therapist to support people with neurological conditions. In some trusts there are few or no therapists trained to work with people with neurological conditions, but there are patients with neurological conditions living within the Trust’s catchment area. This particularly relates to Physiotherapists, speech and language therapists and occupational therapists.
7.4 Specialist Nurses are recognised as a significant benefit to the healthcare team’s role in managing patients with long-term conditions, particularly for neurological conditions. This is supported by guidance across the NHS (see NICE guideline 35 2006 for Parkinson’s disease which refers professionals to the importance of using Specialist Nurses in supporting this progressive condition. They are a crucial source of support and advice to patients, families and carers and enable many to manage their condition effectively and to remain independent in the community. Workforce planning needs to ensure patients have access to this important professional group.
7.5 Specialist Nurses are employed haphazardly and often according to pressure from local patients and Voluntary Sector charities rather than through effective planning. Consequently many are overstretched and often unable to support the number of patients with a specific condition in their locality. Eg The Cardiff NHS Trust recently informed the Pontypridd and North Glamorgan Trusts that they would no longer accept Parkinson’s referrals from those areas as the Specialist Nurse based in Cardiff could not cope with hundreds of extra patents. However, no extra posts have been created to support patients in RCT and Merthyr or Cardiff.
7.6 In an Epilepsy Action survey in January 2007, number of respondents commented that there was a need for more epilepsy specialists in the area and some indicated that they were unable to see a specialist locally. Only 29% of respondents reported seeing a specialist nurse. Epilepsy specialist nurses are widely recognised as key to delivering Epilepsy care. Epilepsy Action estimate that 53 Epilepsy specialist nurses are required in Wales, based on a caseload of 250 patients per Specialist nurse. At present there are only 12 in post across Wales.
Examples of good practice
8.1 There are many examples of good practice across Wales. However, they are regularly dependant on the personal interest of specific Doctors, Nurses or Therapists. This means when a Consultant moves or retires whole services risk ending in a very short space of time with little information for patients. Effective workforce planning that takes this into account will make it more likely that good practice can be further developed and mainstreamed.
8.2 Specialist Nurses are increasingly important here as they are often able to create a more medium term approach to supporting patients with neurological conditions. This is partly because they are more adept at creating effective Multi Disciplinary teams around them which significantly benefits the patient.
8.3 Rapid response team for Multiple Sclerosis Patients in Newport. Those with MS in the city of Newport are well served by the existence of a rapid Response team, a specialist community nursing team able to offer advanced treatments such as Intravenous Therapy in the home.
8.4 Epilepsy Action runs a Sapphire Nurse Scheme which aims to support the appointment of epilepsy nurses in hospitals across the UK. Through this scheme funding is provided for an epilepsy specialist nurse up to maximum of one year full time or two years part time, after which the relevant NHS Trust/ Commissioners takes over all ongoing costs. Epilepsy Action seeks written commitment to ongoing funding before a final offer of funding.
8.5 The Motor Neurone Disease Centre based at Rookwood Hospital with two part time specialist nurses providing support in south east Wales with the major funding provided by the Motor Neurone Disease Association together with a contribution from the Cardiff & Vale NHS Trust is currently providing an excellent service.
8.6 Another example of good practice to be acknowledged is the Motor Neurone Disease support services in Carmarthenshire. This initiative is a collaboration between professionals. Again, driven by the interests of individual, this initiative is not funded / commissioned, but arises out of the health and social care professionals’ desire to provide a high standard of care across a wide geographical area.
Recommendations
9.1 There should be appropriate voluntary sector involvement in the workforce planning process at local, regional and national level.
9.2 Workforce Planning should be closely aligned with a strategy for the development of neuroscience Services in Wales.
9.3 There should be a mechanism for ensuring that service planning that cover rare conditions do not fall through gaps in the planning system.
9.4 Workforce planning should be approached from a multi-agency and also a multi-disciplinary perspective. This includes working with primary, secondary and tertiary services - making it patient centred, working with care pathways might also be useful.
9.5 'Rehabilitation’ or long-term management for conditions must also be adequately planned so that symptoms may be managed effectively and early to assist in good quality of life.
9.6 Work force planning must ensure health and social care services must make the most of innovative practices - developing transition services, facilitating training for adopting new techniques and therapies from translational research and commissioning successful pilot projects that have been funded through 'soft money’ or voluntary organisations.
References
1. Jader L. 2007. An overview of neurological disorders in Wales. Neuroepidemiology.;28(2):65-78.
2. Office of National Statistics 2004. Census 2001, Office of National Statistics. www.statistics.gov.uk [Accessed 6th November 2007]
