Policy responses and statements

Name of organisation:

NHS Quality Improvement Scotland (NHS QIS)

Name of policy document:

Draft Clinical Standards for Neurological Health Services

Deadline for response:

27 February 2009

Background: Disorders of the nervous system are common. It is estimated that ten million people in the UK live with some form of neurological condition which has an impact on their lives. The most common physically disabling condition affecting young people, multiple sclerosis (MS), has a particularly high prevalence in Scotland compared with the rest of the UK. Neurological conditions account for one in five emergency hospital admissions, one in eight general practice consultations and a high proportion of disability, particularly severe and progressive disability, in the population. The scarcity of services for people presenting with neurological symptoms was presented to the Scottish Government Health Directorates (SGHD) and in response NHS Quality Improvement Scotland (NHS QIS) was given the task of undertaking a review of services.

Pre-scoping process:

NHS QIS set up a steering group in 2005 to review and scope the provision of neurological health services in the context of the strategic direction set out by the SGHD in Partnership for Care: Scotland’s health white paper 2003. The group reported in April 2006, and identified the need to undertake a stocktaking exercise to establish the nature and quantity of existing service provision. It also recommended the development of generic clinical standards for the provision of services for those affected by neurological conditions, to be based on the principles in the Department of Health’s National Service Framework (NSF) for long-term conditions.

Review of neurological health services:

The management consultancy Scott-Moncrieff was commissioned to carry out the stocktaking exercise and published their report in 2007. They found that services available to those with neurological conditions in Scotland vary significantly between NHS boards.

Specific findings of the report included:

• services for people with neurological conditions varied across Scotland
• NHS boards were unable to describe their neurological health services accurately
• NHS boards appeared to consider neurological health services a low priority
• NHS boards were experiencing recruitment difficulties for their neurological health services
• there were no waiting times targets for follow-up appointments
• there was a lack of communication among services provided for people with neurological conditions
• availability of inpatient beds was limited, particularly in services such as rehabilitation, palliative and respite care
• specialist nurses were considered a valuable resource, but their provision varied greatly across the boards, and
• the recent pilot of telemedicine neurological services in the north of Scotland was regarded as successful, by patients, consultants and nurses.

Development of the draft clinical standards for neurological health services:

NHS QIS set up a standards project group, which met for the first time on 31 January 2008, to develop clinical standards for neurological health services. The project group was drawn from across Scotland and its membership aimed to reflect the multidisciplinary nature of the services required to manage neurological conditions.

Scope of the standards for neurological health services:

The project group made the decision to produce generic standards applicable to all neurological health services with the exclusion of paediatric neurological health services and services for people with acquired brain injury and stroke. Paediatric neurological health services were excluded as the services are provided separately from those provided for adults. Acquired brain injury and stroke services were excluded on the basis that they have already been the subject of specific standards setting and auditing arrangements and that they generally do not involve neurologists as major care providers.

In addition to the generic standards, the project group developed condition-specific standards for five conditions which represent a high proportion of all neurological chronic conditions managed both in primary and secondary care. These conditions are:

• epilepsy
• headache
• motor neurone disease
• multiple sclerosis, and
• Parkinson’s disease.

The overall aim was to produce standards which deal with the whole patient journey and would result in an improvement in care for all those suffering from neurological conditions. In selecting these conditions for some specific standards, the project group wanted to emphasise the value of sub-specialty clinics and multidisciplinary working in chronic disease management. The project group recognised the potential for other patient groups to feel excluded but felt this could be addressed by ensuring the generic standards could be applied to services provided for all patients with neurological conditions.

It is intended that the standards will support rather than duplicate existing quality initiatives, for example national waiting times targets.

Who do these standards apply to?

The standards are applicable to all NHS territorial boards as well as the State Hospitals Board for Scotland and the National Waiting Times Centre. The standards apply to any care setting within an NHS board including primary, secondary and tertiary care. The following special health boards will not be directly assessed against the standards but the development of the standards may have implications for them:

• NHS 24
• NHS Education for Scotland
• NHS Health Scotland
• NHS National Services Scotland (in particular Information Services Division)
• NHS Quality Improvement Scotland, and
• Scottish Ambulance Service

The SGHD has an overarching responsibility to ensure that the work of NHS boards, particularly in developing national quality improvement measures, is co-ordinated. National co-ordination of data collection and information provision. From its inception, the neurological health services standards project group was concerned that, in the interests of patient equity, the sharing of good practice and avoidance of duplication of effort and resources, a national approach to data collection and provision of information should be adopted. It has emerged that, whilst a number of different NHS agencies have a contribution to make, no single organisation has responsibility for co-ordination of these activities across NHSScotland.

The group feels strongly that this is a gap which must be filled in order to allow the embedded continuous quality improvement process which it sees as an essential component of neurological services in the future. Standard 1.1 makes reference to this need but because of the lack of existing structure, is addressed to NHSScotland as a whole. During the consultation period the neurological services standards project group, supported by NHS QIS, will be exploring with relevant stakeholders how this should be achieved.

COMMENTS ON
NHS QUALITY IMPROVEMENT SCOTLAND (NHS QIS)
DRAFT CLINICAL STANDARDS FOR NEUROLOGICAL HEALTH SERVICES

The Royal College of Physicians of Edinburgh is pleased to respond to NHS QIS on the Draft Clinical Standards for Neurological Health Services.

The College has collated comments received from Fellows working as consultants in neurological practice in Scotland.  In general, the draft standards are welcome and useful.  It is clear that considerable thought has gone into their preparation and the layout is readily accessible.  The glossary is very useful.  However, some of the language used requires clarification, particularly with a view to making the standards measurable and achievable. 

Clarification of the term “Specialists”

The glossary to the document includes a description of a “consultant who specialises in the diagnosis and management of neurological conditions”.  At other points, however, the document makes reference to more specific specialists eg “a doctor who specialises in epilepsy”, criterion 6.1, page 17.  The question that arises is whether this second description refers to any consultant neurologist within the United Kingdom, or whether the authors intend that only those neurologists who have a sub-subspecialty interest in the condition of epilepsy would be considered as “specialists”.  Postgraduate training in neurology remains broad based, and it is unlikely that Health Boards would be able to recruit or identify sufficient neurologists with sub-specialty experience in all the disease areas covered by these standards.  SIGN Guideline 70 on the “diagnosis and management of epilepsy in adults” describes an epilepsy specialist as “a consultant with expertise in epilepsy as demonstrated by training and continuing education in epilepsy, peer review of practice and regular audit of diagnosis.  Epilepsy must be a significant part of their clinical work (equivalent at least one session a week)”.  Although time consuming, it would be helpful if the standards could clarify their intention for each of the subspecialty standards included.  There may be situations eg in Parkinson’s disease where general physicians, geriatricians or general practitioners may have specific training and experience in the management of that condition.  Again, it would be helpful to clarify those doctors who would be included as specialists under the general definition given in the glossary.

Standard statement 1.3, page 10

“The NHS board provides nationally consistent information to patients about their condition”.  What is meant by “nationally consistent information”?  How will this be measured?

Standard statement 2.2, page 11

Who will have responsibility for electronic triage of referrals?  How will clinician involvement be assessed? 

Standard statement 2.3a and 2.3b, page 11

Standard 2.3b gives a timescale of 10 working days once the case has been identified as urgent.  However, Standard 2.3a does not include any timescale for the discussion process beforehand, which seems an anomaly. 

Standard statement 3.2b, page 12

This standard talks about collecting “clinician feedback” – does this mean the referring doctor or the clinicians providing the neurological service?

Standard 3.3 - Communication skills courses

Is it really necessary to suggest that individuals should attend a refresher course every 3 years?  Does this not simply reflect the specific enthusiasm of the authors of the draft standards? 

Standard 3.9b - Dissemination of information electronically

Standard 3.9b recommends that discharge information is sent electronically to the GP in 95% of cases.  There are still concerns at local level about the safety and Data Protection aspects of e-mail and other methods of electronic communication, and this may well affect the likelihood of this standard being achievable or appropriate.

Standard statement 4.1, page 14

This standard seems unworkable.  A typed written plan detailing working diagnosis, immediate treatment recommendations, further investigation and management arrangements would normally constitute a clinic letter, and Standard 3.8 suggests that 90% of these should be dispatched within 5 working days of the consultation to the GP.  A similar report could be prepared for the patient, but would require to be written in a language which was understandable, and it therefore seems extremely unlikely that this could be provided any quicker to the patient themselves.

Standard statement 4.3, page 14

What is meant by the “conclusion of the care episode”?  Is the implication that once diagnostic investigations are complete, irrespective of the patient’s clinical condition, they are transferred back to a general unit rather than remaining within neurological services?  What about specialist neurological multi-disciplinary teams and rehabilitation?

Standard statements 4.4a and 4.4b, page 15

This standard refers to “an integrated team providing a diagnostic and treatment service for patients with neurological symptoms unexplained by disease, and patients with defined neurological disease that have co-morbid psychiatric disorders”.  This seems a very long-winded way of describing psychiatric/psychological support to neurological services.  If this is what is intended it could be stated more simply.  Is it realistic to have “initial contact within 24 hours”?  Does this mean specialist nursing staff or medical staff?  Further consultation with appropriate local psychiatric and psychological services would surely be essential before this standard is implemented.

Standard statement 4.6, page 15

There are very few curative treatments in neurology, so it is almost inevitable that patients with neurological disease will require palliative care.  Is it not the function of neurological multi-disciplinary team to provide “active total care” to their patients?

Standard statement 6, page 17

“The diagnosis of epilepsy is confirmed in a dedicated first seizure clinic” - references made to SIGN 70 in this respect.  It should be noted that SIGN 70 gives the recommendation with Grade C that “the diagnosis of epilepsy should be made by a neurologist or other epilepsy specialist”.  It goes on to state as a “good practice point” that “the diagnosis of epilepsy is most appropriately delivered in the setting of a dedicated first seizure clinic”.  Later in the guideline, when looking at the role of epilepsy clinics in section 5.2.1, it is noted that “relevant clinical studies have not yet been undertaken to establish to effectiveness of epilepsy clinics”.  This evidence was reviewed in 2007 when considering whether to update SIGN 70, and it was noted that “there was no evidence of improvement of seizure frequency or severity when comparing specialist clinics with general neurology outpatient clinics, but it cannot be concluded that there is no effect because the available evidence was sparse and of limited quality”.  There remains a body of opinion amongst neurologists that the assessment of a patient with a suspected first seizure is so embedded in day-to-day work that any general neurology clinic would be satisfactory.  Further research in this area is clearly desirable, but it would seem wrong to say at present that this standard is evidence based.

Standard statement 7, page 18

What does the heading “condition management of epilepsy” mean?  This is not clear use of English.  Under the section rationale, it is stated “all health professionals who have contact with patients with epilepsy should be able to manage seizures”.  A better expression might be to say, “all health professionals in contact with patients with epilepsy should be able to provide acute care of seizures”.

Standard statement 9.1, page 21

The use of headache diaries has been given a D grade recommendation in SIGN 107.   “Practitioners should consider using headache diaries and appropriate assessment questionnaires to support the diagnosis and management of headache”.  Some specialists believe that these tend to amplify rather than ease patients’ concerns, so their blanket use might not be appropriate. 

Standard statement 12.3a, page 24

What is intended by “makes contact with the patient within 2 working days of this confirmation”.  Does this refer to contact by letter, telephone or face-to-face interview?  Given the seriousness of the condition concerned and the need to communicate effectively, clarification of this statement would be welcome.

Standard statement 14, page 26

In the rationale section it might be helpful to include mobility issues as an issue.  Patients with multiple sclerosis have considerable needs for AHP input and wheelchair provision, and this should be reflected in the rationale for the standards. 

Glossary - “MS clinically isolated syndrome”

It would be more correct to refer to a “clinically isolated syndrome, which may reflect underlying demyelination”.  Clinically isolated syndromes do not allow a diagnosis of multiple sclerosis to be made. 

Patients and Carer information

All of the conditions described are chronic and incurable, and patients will require information and education for the entire duration of these conditions.  This is specifically mentioned in the multiple sclerosis standards but is not mentioned in the standards for epilepsy, motor neurone disease or Parkinson’s disease, where the chronicity is equally important.  Although this might be assumed to be part of the specialist nurses’ role in these other conditions, it should be stated.

Psychology and Psychiatric advice

Specific mention might be made of the need for access to psychology and psychiatric advice within the various subspecialty diseases mentioned eg cognitive impairment and recurrent seizures in epilepsy, and cognitive and emotional issues in motor neurone disease.  Similarly, in the multiple sclerosis sections, a psychologist is not included as part of a multi-disciplinary team nor referred to in Criteria 16.  In Parkinson’s disease, neuro-psychiatric problems are prominent with estimates of dementia and depression both occurring in up to 50%.  Once again, a psychologist is not included in the multi-disciplinary team and there is no mention of access to psychiatry.

Managed clinical networks

This model is suggested for epilepsy but not for the other conditions.  There is probably an even stronger argument for the managed clinical network approach to multiple sclerosis with its frequent requirement for interface between neurology services, rehabilitation medicine services and urology services, and also of the interface between Parkinson’s disease and mental health services which, again, may usefully be provided by a managed clinical network.

Copies of this response are available from:

Lesley Lockhart,
Royal College of Physicians of Edinburgh,
9 Queen Street,
Edinburgh,
EH2 1JQ.

Tel: 0131 225 7324 ext 608
Fax: 0131 220 3939

[26 February 2009]