Health CommitteeWritten evidence from the Joint Epilepsy Council (ETWP 33)


1. The shortage of neurologists and the discrepancies between the Centre for Workforce Intelligence’s Report of August 2011 entitled “Shape of the medical workforce: informing medical specialty training numbers” and the Royal College of Physicians and the Association of British Neurologists Working Party Report of June 2011 entitled “Local adult neurology services for the next decade”. (paras. 3–13)

2. The shortage of Epilepsy Specialist Nurses in post. (paras 14–17)

3. The shortage of neurophysiological scientists, their training and the threat to the future supply of sufficiently qualified staff. (paras. 18–42)

Who we are

1. The Joint Epilepsy Council (JEC) is the umbrella body for 23 charitable and service provider epilepsy organisations operating in the UK and Ireland and is supported by leading clinicians.

Our Concerns

2. Our concerns centre around the provision of neurologists in general (and epilepsy specialist neurologists in particular), epilepsy specialist nurses and neurophysiological scientists.


3. We see a particular divergence between the Centre for Workforce Intelligence’s Report of August 2011 entitled “Shape of the medical workforce: informing medical specialty training numbers” and the Royal College of Physicians and the Association of British Neurologists Working Party Report of June 2011 entitled “Local adult neurology services for the next decade”.

4. The Working Party Report recites the large and growing demand for neurological services, poor organisation, particular problems with District General Hospital services and that “acute neurology services are of particular concern because they are rarely provided by neurologists, in contrast to those for stroke and other acute medical specialties, resulting in potential adverse outcomes.”

5. The Report notes that “ABN approved standards for the DGH management of acute neurological emergencies are rarely implemented”:

“Acutely ill adult patients with neurological disorders, who do not require immediate intervention, should be seen by a neurologist within 24–48 hours. If the patient is critically ill then they should be seen immediately. All such patients should be under the care of a neurologist.”

6. The Report continues: “despite these concerns, the central recommendation of the 1996 RCP report, to appoint neurologists with appropriate infrastructure support in every DGH, has not been achieved and has been outpaced by spiralling demand. Neurology remains a shortage specialty…”

7. To implement their recommendations, the Report concludes that: “Over the next decade….an increase in consultant UK neurologists from 600 to 880 (one per 70,000 population), most of the expanded workforce being based locally, and more equitably distributed. In turn, this will require expansion in the training grades.”

8. However the CfWI Report in relation to neurologists records that “existing supply appropriate: assume no change needed over the next 3 years”. Although, the Report does state that current growth will not meet demand by 2020 and proposes a review in 2013, the finding that existing supply is appropriate is in direct conflict with the Working Party Report.

9. In his evidence to this Committee on 15 November 2011, the Chief Executive of the CfWI, Peter Sharp, stressed that they worked closely with the Royal Colleges. We do not see that reflected on this issue in their Report.

10. It is not entirely clear to us what information the CfWI is required to take account of in reaching its conclusions, and whether in this instance it took account of:

The NICE clinical guidelines for the epilepsies of 2004 which requires a specialist appointment after a first seizure urgently, meaning within two weeks.

The Epilepsy Action survey of Trusts of January 2009 which showed that over 90% of Trusts by their own admission were failing to meet the two week requirement, some by a very wide margin indeed.

The likely inclusion of avoidable epilepsy mortality and avoidable epilepsy emergency admissions as specific indicators in the new Outcomes Framework and the anticipated drive to reduce the current unacceptably high levels.

The growing prevalence of long-term neurological conditions, placing extra demands on a service already widely recognised as inadequate.

European comparisons. The Working Party Report recites that “although by 2006 the number of UK neurology consultants had risen from one full-time equivalent (FTE) per 200,000 population in 1996 to one per 115,000, mostly in response to outpatient pressures, this still remains less than a third of the European average.”

11. We submit that the above considerations need to be taken into account by the CfWI if it is to provide accurate predictions of future workforce requirements, undertake the horizon-scanning and challenge functions that those giving oral evidence to your Inquiry have referred to and identify and factor in “megatrends”. If it relies for the most part on provider information, it will fail to take into account the external pressures that will alter provide behaviour.

12. In the case of epilepsy, epilepsy specialist neurologists are required to fulfil many functions, including the vital first specialist appointment, and the supply of these specialists is a particular concern. The Epilepsy Action survey of Trusts reported that in England 50% of trusts do not have an epilepsy specialist neurologist.

13. We recognise that the CfWI is a relatively new body. We have enquired recently if it will be looking at the supply of epilepsy specialist neurologists but have not had an answer as yet.

Epilepsy Specialist Nurses

14. It seems a matter of wide agreement that Epilepsy Specialist Nurses and specialist nurses providing support for other neurological conditions are both clinically- and cost-effective. They save money by reducing demands on consultants time and reduce emergency admissions by providing support to patients.

15. The NICE clinical guidelines consider ESNs to be a key part of the team, as does the Department of Health, who issued a Practice Note on the topic. No reputable voice has been raised against this view.

16. The overwhelming current problem is one of commissioning. The Epilepsy Action survey found that 60% of Trusts did not have one ESN. There are about 200 ESNs in post in England but to make the most of patient and cost benefits about 1,188 ESNs are required.

17. There are over 200 trained ESNs not currently employed in that capacity. If, as is hoped and expected, the new focus on epilepsy in the Outcomes Framework leads to the recruitment of more ESNs, then a more organised approach will need to be taken to their education and training to ensure a sufficient supply.

Neurophysiological Scientists

18. For this section, we are entirely indebted to Bridget MacDonald PhD FRCP, Consultant Neurologist.

19. We are concerned that we have failed to train enough neurophysiology scientists to replace our aging workforce. There is no other group who could take over this function.

20. Neurophysiological Scientists are one of five groups of physiological scientists who work directly with patients in the NHS. They are not medical doctors (who are often working in the same department and called neurophysiologists). They are rare—around 400 in UK—but their input is essential.

21. Neurophysiological scientific procedures have application in a range of neurological conditions including dementia, epilepsy, and other nerve and muscle diseases. Neurological conditions affect up to 6% of the population—about half of these involve conditions where neurophysiological information is clinically useful. Diagnosis of many neurological conditions can be difficult.

22. Electroencephalography (EEG) and similar procedures undertaken by specialist neurophysiological scientists are vital to diagnosis. A full complement of suitably qualified and competent specialist neurophysiological scientists is essential if proper standards are to be retained. The necessary competencies of successful neurophysiological scientists extend well beyond the mastery of the technology and include a wide range of patient skills.

23. The demand for their services is high. Taking epilepsy as an example, a new diagnosis of an epilepsy is made in respect to one person in every 2000 of the UK population every year. This equates to 28,500 new diagnoses a year or 80 a day. An EEG will have been undertaken in many of them—aiming at 100% of young people up to the age of 30 years and a good proportion of those over that age.

24. In addition one in 200 people in the UK have an ongoing active epilepsy equating to 289,000 patients. A significant proportion of these patents require an EEG from time to time during the course of their chronic epilepsy or for pre-surgical assessment (this being an expanding area).

25. NICE guidelines require that all patients should have an EEG after a first seizure. Without a successful and accurate EEG result the clinician will not be able to make a properly founded and defensible diagnosis.

26. Training is changing in a way that seems likely to reduce both the quality and numbers of trained neurophysiological scientists. Very little attention seems to have been paid to the problem.

27. We are not convinced that the changes to training put forward by Modernising Scientific Careers will solve this problem. Indeed, they may worsen it.

28. A decision to combine the training of neurophysiological scientists with that of respiratory, gastro-intestinal, cardiological and audiological scientists is likely to produce scientists who are overstretched across a wide range of technical matters and under-qualified and under-experienced in the patient skills needed in any neurophysiological scientist capable of delivering reliable test results.

29. It is inevitable that after qualification scientists will continue to specialise in one of the disciplines. Training in skills which are not used and thus redundant is wasteful financially. It may also be a barrier to the recruitment of highly motivated staff with an interest in only one of the branches of physiology.

30. It is important to recognise that the role of neurophysiological scientists is far more complex than just running a machine.

31. Electroencephalography (EEG) is the monitoring of changing electrical activity generated from the brain’s nerve cells. This activity is collected by attaching up to 25 carefully placed electrodes to the patient’s scalp. The neurophysiologists attach these electrodes and obtain the record. They will interpret the EEG as it is running deciding on the use of activation in order to elicit changes. This might include hyperventilation or flashing lights (photic stimulation). The physiologist often encourages the patient to relax sufficiently to fall asleep thus providing specific information for certain conditions such as nocturnal seizures. They need to manage and interpret behaviour during the recordings including seizures that occur during the test. Other behavioural disturbances which are inherent to some of the conditions for which the patient is having diagnostic testing. The state of a patient emotionally has an impact on the recording—being agitated will degrade the record. This is clearly more difficult in children—paediatrics and neonatal records account for over 25% of the work. One in four of the adults who need the test have behavioural disturbances eg dementia, learning disability or significant psychiatric problems.

32. The Epilepsy Action Survey of 2009 showed that most trusts failed to meet NICE guidelines for the use of EEGs.

33. NHS Workforce Planning reported that:

There is a current shortfall both in trained neurophysiologists and trainees (at least 4.5% posts failing to be filled, but as Trusts close unfilled posts this an underestimate and there is anecdotal evidence of great difficulty finding clinical physiologists at all).

Initial training numbers are reasonable but there are high fall out rates, currently the average number of students qualifying in recent years has been 15.7, but in 2011 there are only 11 students and in 2012 there will only be two qualifying.

Projected numbers for 2020 show fewer neurophysiological scientists will be working for a larger population with potentially higher service demands.

Increased demand for neurophysiological scientists as practice changes—this is an increased demand for higher skills ie nerve conduction studies are now suggested earlier in pathways in the “map of medicine” than previously and will increase demand, also NICE guidelines ask for EEG after all first seizures which will cause a massive increase in EEG use.

Concern about the impact of training on EEG capacity as to be competent in basic EEG in current training takes two years whereas the changes and “generic” physiology training (suggested by Modernising Scientific Careers—see below) will mean that trainees would not be EEG competent at Y2 of the three year degree course.

34. The Modernising Scientific Careers agenda was laid out by Sue Hill in 2004 in “Making the Change”. The proposals were broadly welcomed as appropriate. The 2008 Darzi Report also understood and recognised the nature of the service.

35. However, in September 2008 Marion Scott speaking for the National Research and Development Office at National Blood Service meeting on Modernising Scientific Careers commented that assessments had shown the current scientific workforce needed overhauling as it was unaffordable and inappropriate and that graduates were “not needed to run machines”.

36. When the Healthcare Science Programme Board met in March 2009 they expressed concern about the detail of course transition and also about the funding of the training. “NHS management driving this forward will depend largely on cost implications and capacity delivery.”

37. The outcome has been that all the physiological scientists are being lumped together -neurology, respiratory, gastro-intestinal, cardiology and audiology. Each group has important clinical roles but their skills are not necessarily generic or transferable as the current plans for their group training assumes.

38. The skills required to undertake for example an EEG on a baby who is crying and a echocardiogram on a patient with an unusual chest shape are basic skills for each practitioner (neurophysiological and cardiological scientists respectively) but not transferable. The idea that a generic and brief training would produce competence across this wide skill mix is incorrect.

39. Recognised statutory registration by a professional group allows regulation and governance of clinicians and is particularly important where patient protection and standards of care need to be maintained. It is feasible if there is consensus as to the way in which care should be delivered and to what standard.

40. Neurophysiological scientists have maintained a voluntary register with the other clinical physiologists the “Registration Council for Clinical Physiologists”. They applied to the Health Professions Council in October 2003 who recommended regulation for this group to the Secretary of State for Health in 2004.

41. This process does not appear to be advancing at all despite regulation being on the Modernising Scientific Careers plan and the evidence having been provided to the necessary standard.

42. In the absence of concerted centralised action, this small but valuable group of clinicians upon whom there is increasing demand will not be replaced at anything like the required rate. The impact on practice and patient care would be severely detrimental.

December 2011

Prepared 22nd May 2012