House of Commons - Health - Written Evidence

Select Committee on Health Written Evidence

Evidence submitted by the Joint Epilepsy Council of the UK and Ireland (WP 10)

1. INTRODUCTION

1.1 The Joint Epilepsy Council of the UK and Ireland represents 22 epilepsy organisations operating in England, Wales, Scotland, Northern Ireland and the Republic of Ireland. Our mission is to promote improved standards of and access to integrated services in health, education and social care for people with epilepsy and their carers and to increase epilepsy awareness amongst politicians, civil servants, service providers and the general public. The JEC includes representation from patient organisations and the International League against Epilepsy (ILAE) representing clinical specialists with an interest in epilepsy.

1.2 Over 456,000[49] people have epilepsy in the UK. It is the most common serious neurological condition and is a major long-term disability with similar numbers of people affected as insulin dependent diabetes. JEC is a member of the Neurological Alliance and our recommendations for workforce planning in the area of neurological services has relevance to all people with a neurological condition.

1.3 The JEC welcomes this opportunity to submit evidence to the Health Committee relevant to the inquiry into Workforce needs and planning for the health service including.

— How effectively workforce planning, including clinical and managerial staff, has been undertaken, and how it should be done in the future.

— Recent policy announcements, including Commissioning a patient-led NHS.

— Technological change.

— An ageing population.

— How ability to meet demands will be affected by financial constraints.

— The European Working Time Directive; increasing international competition for staff; early retirement.

— To what extent can and should the demand be met, for both clinical and managerial staff by changing the roles and improving the skills of existing staff; better retention; the recruitment of new staff in England; international recruitment.

— How should planning be undertaken: To what extent should it centralised or decentralised?

— How is flexibility to be ensured?

— What examples of good practice can be found in England and elsewhere?

2. SUMMARY

2.1 The key issue in this area as far as the JEC is concerned is the apparent absence of any plan (national, regional or local) to address the critical shortfall in the number of neurologists in England.

2.2 There is evidence that this shortfall is critically affecting the level of care provided to people with epilepsy, including increased levels of epilepsy related deaths.

2.3 A number of major recent initiatives have been launched that could positively impact on patient care if effectively implemented, that implementation is seriously compromised by shortages of neurologists. These include, but are not limited to:

— The National Service Framework for Long Term Conditions, focussing on Neurological Conditions.

— The NICE Clinical Guidelines on the Epilepsies.

2.4 "The Department of Health does not have a target for growth in the number of neurologists"—quote from correspondence from the Department, 2005.

2.5 This is in the face of the (conservative) view of the Royal College of General Physicians that England requires a minimum of 781 WTE neurologists by 2012, compared to the current 403 and the Department's estimate of 510 by 2012.

2.6 networks

3. RECOMMENDATIONS

3.1 Central planning is key if there is to be any progress on increasing the number of neurologists to that required to provide a comprehensive and effective service.

3.2 The JEC recommends that the government adopts as a target for the number of neurologists the recommendation of the Royal College of General Physicians that England will require 781 WTE by 2012.

3.3 The JEC further recommends that the government adopts as a target the recommendations of the Consensus Group:

— Epilepsy specialist nurses from 140 to 600 across all epilepsy disciplines (adult, paediatric, learning difficulties) within two years.

— Paediatric neurologists from 75 to 150 within five to 10 years.

— Learning disability specialists from 340 to 500 within five to 10 years.

— Neuroradiologists from 110 to 160 within five to 10 years.

— The JEC recommends that the government puts in place such measures as are needed by way of training and recruitment to achieve these targets.

4. HOW EFFECTIVELY WORKFORCE PLANNING, INCLUDING CLINICAL AND MANAGERIAL STAFF, HAS BEEN UNDERTAKEN, AND HOW IT SHOULD BE DONE IN THE FUTURE

4.1 The initiatives noted in the following section have the potential to address many of the key shortfalls in epilepsy services also highlighted in that section.

4.2 It is clear to the JEC that there has been no effective planning to address the workforce needs of the majority of those initiatives. Indeed in the Department of Health's own words, "it does not have a target for growth in the number of neurologists"[50] Two initiatives in particular have key work force implications in Neurology, particularly on the numbers of clinicians working in this field.

4.3 The NICE Clinical Guidelines on the Epilepsies published in 2004[51]

4.3.1 A consensus group of expert clinical epileptologists and representatives of the epilepsy voluntary sector met in November 2004[52] to review various survey findings characterising the current state of epilepsy care and to compare against standards outlined in the (then) recently published NICE epilepsy guideline.

4.3.2 The expert consensus was that:

— Current services fell well short of the standards set out by NICE in terms of waiting times for specialists and diagnostic tests, and research findings indicated that little was likely to change in the next four years.

4.3.3 The expert group was aware that the shortage of neurologists and other epilepsy specialists was not going to improve overnight and called for a number of short-term solutions. In the medium term the group believed that addressing this shortage is the principal change needed to ensure epilepsy services improve sufficiently to achieve the standards set by NICE.

4.3.4 The group called for a national plan to increase the number of epilepsy specialist nurses from 140 to 600 across all epilepsy disciplines (adult, paediatric, learning difficulties) within two years. Nurses play a critical role in treatment monitoring, offering advice and support to patients and families, and education for patients and GPs, therefore providing much needed support to people with epilepsy, the primary care team and to neurologists.

4.3.5 In the medium term (next five to 10 years) the group called for the Government to immediately put in place a programme to increase the number of adult neurologists from 352 to 1,400; paediatric neurologists from 75 to 150; learning disability specialists from 340 to 500; and neuroradiologists from 110 to 160, all within five to 10 years.

4.3.6 This statement was supported by over 100 epilepsy clinicians, seven voluntary sector groups and 115 MPs (EDM 685, 2005). [55]

4.3.7 No formal government response to this call was ever received.

4.4 The National Service Framework for Long Term Conditions, focussing on Neurological Conditions[56]

4.4.1 In a speech by Stephen Ladyman MP, Parliamentary Under Secretary of State for Community, 11 May 2004: Long Term Medical Conditions Alliance he stated that he would, in relation to the Long-Term NSF:

— evaluate and cost the recommendations;

— assess the implementation issues; and

— assess workforce and resource implications.

4.4.2 Based on an answer from Baroness Andrews, House of Lords, 10 Jun 2004, [57]that the Long Term Conditions Care Group is working to increase the number of neurologists and that the Speciality Workforce Advisory Group has been reviewing the number of consultants on an annual basis, along with the professional groups; The Department of Health has come to the conclusion that there are sufficient higher specialist trainees for there to be enough qualifying for consultant posts to meet estimated future demands.

4.4.3 In response to an enquiry to the Department of Health to enquire as to the outcome of the then minister's statement and that of Baroness Andrew we were informed that:"The Department of Health does not have a target for growth in the number of neurologists. The answer given in the House of Lords refers to projected growth based on a number of factors including number of trainees, expected retirements and potential for international recruitment. The assessment of demand was taken from information provided in the Royal College of Physicians publication "consultant physicians working with patients"[58] which estimated a requirement of 2.5 whole time equivalent consultants per 250,000 head of population. That information and projected growth available in 2004 suggested that supply of and demand for neurologists would be equal, 510 whole time equivalent trained specialists, in 2012." [59]

4.4.4 Unfortunately the information the department based their answer on is incorrect—which leaves a major question mark against the departments workforce planning. Whilst the supply might equal 510, the demand is much greater than that.

4.4.5 The Royal College of Physicians publication "consultant physicians working with patients" actually estimates that the workforce requirements for Neurology in England are as follows:

4.4.6 "To provide comprehensive neurological care, including the care of the acutely ill neurological patient, one whole time equivalent consultant neurologist is required for 40,000 population . . . In summary, this model demands 1,250 NHS neurologists, 175 centre-based neurologists and 78 academic neurologists, which gives a total of approximately 1,400 nationally".

4.4.7 The Royal College concedes this target is perhaps unrealistic in the short term and goes on to call for a target of 909 Whole Time equivalent across the UK by 2012 (3.9 WTE for 250,000 population). Based on the population of England (mid 2004) of 50.1 million this equates to a (conservative) demand for 781 WTE neurologists.

4.4.8 There were, at September 2004, 403 fte equivalent neurologists in England[60], the Department of Health, by its own words, does not have a target for the number of neurologists, yet estimates by 2012 it will have 510.

4.4.9 Even if this "target" is met the shortfall against the conservative Royal College estimate is that England will only have 65% of the neurologists required to provide comprehensive care. Against the full calculated requirement of 1,400 neurologists in the UK (1,165 in England), England will have only 43% of the neurologists required.

4.4.10 It should also be noted that the Royal College of Physicians estimates were prepared before any of the various initiatives mentioned above had been published.

4.4.11 It should be further noted that there is evidence (although not as comprehensive evidence) of similar shortfalls in the numbers of Paediatric Neurologists, Epilepsy Specialist Nurses, Learning Disability Specialist and Neuroradiologists. [61]

4.5 The Long Term Conditions Care Group Workforce Team

4.5.1 We are aware of The Long Term Conditions Care Group Workforce Team; however we have seen no evidence that it is undertaking any work to address the shortfall in capacity as identified above.

4.5.2 According to the DoH website "The CGWT supports the development of the Long Term Conditions NSF. It explores how the development of new roles can support the existing workforce, and thereby increase overall workforce capacity." [62]

4.5.3 However we have seen no evidence that it is undertaking any work to address the shortfall in capacity as identified above.

5. RECENT POLICY ANNOUNCEMENTS

5.1 This section firstly sets out the nature of the epilepsies and the standard of existing epilepsy services and secondly sets out JEC concerns about the impact of recent policy announcements on workforce issues relating to epilepsy services. Epilepsy illustrates well the challenges of workforce planning for a condition that has unpredictable severity. Many of the world's leading epilepsy specialists work in the UK, but very few GPs understand epilepsy sufficiently at a community level and there are too few consultant neurologists specialising in epilepsy in both adult and paediatric care.

5.2 The nature of epilepsy and epilepsy services

5.2.1 Epilepsy is a neurological condition which presents in as many as 50 different types. It is diagnosed when someone has recurrent seizures (also known to many people as fits, grand mal, petit mal, absences). It is caused by excess electrical activity in the brain.

5.2.2 The Chief Medical Officer has confirmed that epilepsy has suffered historical neglect and lack of investment compared with other long-term conditions. [63]As a result there is a serious treatment gap identified since 1950 in six national reports. There is a serious treatment gap at present for people with epilepsy.

5.2.3 Seven out of 10 people with epilepsy should be seizure-free on appropriate first-line medication but currently only 5 out of 10 people are estimated as achieving this. This means two out of every five people experiencing seizures could be seizure free, but are not. In total over 80,000 people with epilepsy are having seizures that could be prevented if they received the same level of care as people attending the best epilepsy treatment centres. As well as improving quality of life and saving lives, investment in epilepsy would begin to deliver major savings in public expenditure.

5.2.4 The National Institute of Clinical Excellence states that epilepsy misdiagnosis rates in the UK are between 20 to 31%.[64] The annual cost of misdiagnosis is estimated at £160 million[65] plus the medico-legal costs associated with complaints and claims and investigations such as the Holton Inquiry in Leicester.

5.2.5 50% of children with epilepsy under perform at school. 58,900 people with epilepsy are claiming disability living allowance. This currently costs £184 million per year[66] (Source: Information and Analysis Directorate), but it is estimated with investment in workforce £66 million could be saved per annum.

5.2.6 A UK-wide NICE Clinical Audit on Epilepsy Deaths 2002[67] found that up to 400 of 1,000 epilepsy deaths each year are potentially avoidable through improved management of seizures. The Findlay Fatal Accident Inquiry 2002 also highlighted the need for implementation of national guidelines on epilepsy as a key preventative strategy in respect of SUDEP (Sudden Unexpected Death in Epilepsy). SUDEP mainly affects young people and can affect anyone with epilepsy who is not seizure-free.

5.3 Government Policy in this area is set out in:

5.3.1 the Government Action Plan for Epilepsy 2003; [68]

5.3.2 the NICE Clinical Guidelines on the Epilepsies published in 2004;

5.3.3 the new GP Contract;

5.3.4 the National Service Framework for Long Term Conditions, focussing on Neurological Conditions;

5.3.5 Our health, our care, our say: a new direction for community services White Paper;

5.4 Amongst other things these initiatives provided evidence of the need, and guidance on how to deliver improved epilepsy services, providing:

5.4.1 the need for local epilepsy plans;

5.4.2 urgent referral to epilepsy specialist consultants;

5.4.3 prompt investigations;

5.4.4 a structured annual review, with a specialist if the patient is a child or has on going problems with their condition;

5.4.5 that patients should be well informed on important issues such as drug interaction and side-effects, issues for women of child bearing age, the risk of seizures and fatality.

5.5 Whilst these national initiatives are to be welcomed as raising the profile of epilepsy, they have not been followed (as noted in the preceding section) by investment in workforce requirements to implement necessary change.

5.6 Most critically, the Department of Health's Epilepsy Action Plan, produced in response to the NICE Clinical Audit on Epilepsy Deaths 2002 included no plans to address the critical workforce shortage at the heart of many of the shortfalls in epilepsy care identified in the Audit.

6. IMPACT OF RECENT POLICY CHANGES

6.1 The JEC wishes to register concerns that to the extent that there have been any recent advances in epilepsy care in recent years these are particularly precarious at a time of restructuring and potential fragmentation in service providers. These changes are also proposed at the same time as increasing financial and other constraints on residential care providers further increasing demand and risk in the management of epilepsy in the community.

6.2 Commissioning a patient-led NHS. Proposals for restructuring of services may increase costs in the short term, but will not generate any increase in relevant workforce. JEC is concerned about the impact on services by a diversion of funds to restructuring of services at this time.

6.3 Recent proposals for reform are set in a context of a significant number of localities facing financial crisis and leading to service cuts in some areas. One example that impacts on people with epilepsy is the proposed closure of the Park Hospital in Oxfordshire.

6.4 Of equal concern is the impact of reorganisation on vital planning of services. There will inevitably be significant delays due to lack of certainty; staff morale and the necessary time and resources needed in establishing new organisations. Existing services are unlikely to be further developed and initiatives within PCT provided services stifled. The JEC would like to see an epilepsy champion in each current sized PCT.

6.5 Further, it is difficult to see under the current proposals how people with epilepsy would be involved in the planning of epilepsy services. Epilepsy patient and carers organisations can most effectively provide evidence-based information on the needs of people with epilepsy, but it is not transparent that this would be required of all commissioning or provider organisations under the proposed new reforms.

6.6 Payment by results JEC has serious concerns about the tariff level for epilepsy because the cost appears not to reflect the real cost and the differing complexity of care between conditions. This could make it difficult for complex epilepsy cases to access appropriate care, especially where a multi-disciplinary team is required. The extra cost for the more complex cases means that providing these services will not be cost efficient. The Government has stated that if providers fail to provide services at or below the current tariff, funding will be withdrawn and the service will close. Concerns have been expressed to us by clinicians about the impact of payment by results. Unless some services are protected and mandated, you will see providers withdrawing from those services for economic reasons, which would disadvantage people with epilepsy.

6.7 Practice-based commissioning JEC would also like raise concerns about the capacity of practice-based commissioning to commission epilepsy services and also the capacity of practice-based commissioning to adequately involve patient expertise and experience. There is also a serious question of the ability of the new system to effectively monitor access and the quality to services. JEC has concerns that practices may be too small to establish and deliver practice based commissioning effectively. Epilepsy is a good example of a condition where the level of knowledge and expertise of GPs is poor and where significant safeguards would need to be in place before (Chief Medical Officer Annual Report, 2001).

6.8 Changes of Service Providers—Choice Agenda. The organisation of integrated care should be such that no unnecessary barriers are created between sites of health service delivery. Epilepsy services management requires coordination across primary; secondary care and tertiary care. Each person with epilepsy will have different healthcare needs. This relies on the individual being able to make informed choices about their own, complex and changing care needs, with the support of competent practitioners who are willing and able to work collaboratively. Integration of services is key.

6.9 JEC is concerned that new systems introduced may lead to increased fragmentation of services. Changes to service providers must be done in consultation with existing providers; with specialist patient organisations and people with epilepsy. These changes should be structured, agreed and take into account individual needs and preferences.

6.10 Another critical issue is the capacity for effective monitoring of access to and quality of services.

7. TECHNOLOGICAL CHANGES

7.1 The diagnosis of epilepsy is very difficult and requires specialists with training and expertise in the condition. [69]

7.2 The diagnostic tool of choice is MRI.

7.3 The growing sophistication of MRI and the shortage of suitably skilled technicians to interpret effectively the results is a further area where the JEC believes Workforce planning is not meeting the needs of people with epilepsy and keeping up with increasing technological development.

8. AN AGEING POPULATION

8.1 The incidence of Epilepsy increases in the elderly, due to a number of factors, including epilepsy developing as a result of brain injury following a stroke.

8.2 Indeed old age is the most common time of life to develop epilepsy. [70]

8.3 Clearly an ageing population is going to result in an increasing number of older people with epilepsy placing yet more demands on an already under resourced area.

8.4 No plans are evident to accommodate the impact of the ageing population on epilepsy services.

9. ABILITY TO MEET DEMAND

9.1 Estimates of workforce needs for epilepsy in 2005 indicate a serious short-fall, see section 3.

9.2 Epilepsy is a condition of historic under-funding.

9.3 Table 1 below compares the population per neurologists in the England with the rest of Europe. [71]

Table 1

	Population per neurologist	Ratio compared to England
Austria	23,202	5.4
Denmark	21,186	5.9
France	38,462	3.2
Greece	21,322	5.8
Italy	8,117	15.3
Luxembourg	23,866	5.2
Norway	18,416	6.8
Netherlands	25,733	4.8
Portugal	33,113	3.8
Sweden	35,587	3.5
Switzerland	29,070	4.3
England*	124,000	1.0

*English figure adjusted for 2004 Neurologist numbers and Population

Other figures from 2002 report

9.4 Table 2 below sets out JEC estimates of the existing resource and demand and the estimated cost per annum of meeting demand. [72]

Table 2

	Existing Resource	Demand	Cost Per Annum
Access to a GP with basic knowledge of epilepsy	Poor knowledge base	Epilepsy Training—One course per year in each PCT	£700,000
A seamless patient journey between GP and hospital	Some informal clinical networks	An epilepsy "Tzar" or lead in each region	£750,000
Access to a specialist nurse	150	600	£12,600,000
Access to a paediatric neurologist with an interest in epilepsy	70	150	£8,000,000
Access to a consultant neurologist	352	1,400	£104,800,000
Access to a clinical neurophysiologist	75	24	£4,325,000
Total			£131,175,000

Footnote: recommended numbers of neurologists, paediatric neurologists and neurophysiologists are taken from the Association of British Neurologists, British Paediatric Neurologists Association and Association of British Clinical Neurophysiologists.

9.5 Additional pressures such as the European working time directive and international competition increase the urgency for action in this area.

9.6 Workforce planning to implement existing national policies on epilepsy does not exist or is not in the public domain. Despite increased funding in the health service, there is growing evidence that, locally, health officials do not feel that they have sufficient money to implement clinical guidelines and national policy. A JEC survey of PCTs and SHAs identified financial constraints as the main barrier to implementing government policy outlined in the Government Action Plan on Epilepsy 2003.

10. CHANGING ROLES, IMPROVING SKILLS, BETTER RETENTION, RECRUITMENT

10.1 Changing roles

JEC supports the development of managed clinical networks as a model for delivery of epilepsy services which can best manage the risks resulting from a serious workforce shortfall in the area of delivery of epilepsy services. Managed Clinical Networks have been adopted as the model of service delivery in Scotland. Whilst clinical networks significantly reduce the numbers of specialists needed through use of an integrated team of GPs, nurses and a range of specialists, networks cannot be developed without an investment in workforce.

10.2 Improving Skills

A training strategy for existing staff is clearly important. In particular JEC recommends the investment of one epilepsy course for GPs in each PCT area.

10.3 Training for managers

One particular concern reported by clinicians to the JEC is the constant demand from management that the number of patients remaining under hospital follow-up should be as low as possible, and this demand increases whenever there are increased concerns about the financial situation in the NHS, as now. Although on the face of it this is a reasonable demand, pressure of this kind represents a particular threat to patients with chronic diseases, whose long-term care devolves to the GP (who may well not be familiar with epilepsy and particularly with new drugs etc). JEC would recommend that training for NHS managers should include clinical risks associated with demand management of patients with long-term conditions.

10.4 GP Contract

Epilepsy is part of the GP contract, but there has been no national requirement for training GPs to deliver quality epilepsy care in spite of a series of national reports identifying that the knowledge base for epilepsy is particularly weak at a primary care level in comparison with other chronic conditions.

10.5 Better Retention

JEC increasing receives reports from existing clinicians about difficult working conditions and low morale. There are also reports about concerns about the impact of new policy measures such as payment by results on their work. JEC would support an independent report based on a confidential survey of existing NHS clinicians allowing their views and concerns to be raised in the public domain.

10.6 New Staff

Table 2 sets out the estimated investment needed in the workforce for epilepsy services to enable the development of clinical networks across England. The greatest source of investment identified is to fund a far greater number of neurologists and specialist nurses. The benefit would not be restricted to people with epilepsy, but also to people with Parkinson's disease, multiple sclerosis, cerebral palsy and every other neurological condition.

11. HOW SHOULD PLANNING BE UNDERTAKEN?

11.1 Practice-based commissioningConcerns have already been stated regarding the competence and capacity for practice-based commissioning relating to epilepsy. There is also the concern that if commissioning is too localised it will not be possible to involve the relevant expertise and views of stakeholders.

11.2 There needs to be a critical mass of funding in order to support specialised services and the proposed reforms will make funding uncertain and difficult to plan ahead of time.

11.3 Planning for consultant neurologists and paediatric neurologists needs to be centralised. There is such an acute shortage of specialists in this area that it requires national planning. As it takes 10 years to train a neurologist planning needs to take account of short-term, medium and long-term needs.

12. THE JOINT EPILEPSY COUNCIL WOULD WELCOME THE OPPORTUNITY TO EXPAND ON THIS EVIDENCE AND PRESENT ORAL EVIDENCE TO THE COMMITTEE.