Meeting:
IPG
Date:
12th October 2011
Item:
36/11 (i)
NSAG Application
Unusual and Complex Sleep Disorders (Narcolepsy and Violent Parasomnias) - NHS Lothian
The National Services Advisory Group (NSAG) usually annually receive, give initial consideration to and further decide on recommendations for applications for
national designation however, none had been proposed this year. This application is a late application.
Prior to recommendations being agreed by NSAG (meeting planned for 27th October 2011) the applications are submitted to Regional Planning Groups for
review. As part of this NoSPHN are asked to review the bids to support discussions firstly at the NoS Integrated Planning Group (IPG) and then NoSPG prior
to NSAG taking the bids to the National Board Chief Executives’ Group.
This year NoSPHN have again worked with a representative of the Scottish Public Health Network (ScotPHN) to review the application (attached) and who will
advise as appropriate the other 2 Regional Planning Group colleagues.
NoSPHN have followed up and requested further information from NSAG some of which has been received and incorporated into the review, some is still
pending.
Action
NoSPG members are asked to discuss the outcomes of the NoSPHN review, propose amendments and/or follow up of any additional information required for
reaching a decision and / or endorse the application and if approved advise on the priority they would accord to the proposal relative to other developments /
service pressures for submitting to NoSPG (30th November) for final decision. Given that the NSAG Group meets prior to NoSPG, NSAG will be advised of the
recommendation pending agreement at NoSPG on the 30th November.
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NORTH OF SCOTLAND
PLANNING GROUP
NoSPG Criteria to determine the appropriateness of / Regional Support for a National Initiative1
Summary
Unusual and Complex Sleep Disorders (Narcolepsy and Violent Parasomnias) - NHS Lothian
The proposed specialist assessment and diagnostic service would be provided by the Department of Sleep Medicine within the Royal Infirmary of Edinburgh
for patients in 2 clinical groups - Narcolepsy and Violent Parasomnias. Local Boards would refer and treat on advice where appropriate following referral.
Boards would be required to meet the attendant drug costs.
A prevalence of 0.01% is quoted for the Scottish population (although prevalence for Parasomnia is unknown). 60 referrals are predicted per annum (30 for
each condition) leading to the diagnosis of approximately 3 – 5 new patients per year with narcolepsy, and approximately 20 new patients per year with a
Parasomnia. The applicants stress the significant impact a correct diagnosis has on the individual with a sleep disorder; and savings to the NHS in terms of
reduction in unnecessary investigations, clinical attendances, and treatment costs.
The application is supported by the existing regional sleep centres in Scotland (including email / letters of support from the Inverness, Aberdeen – this is
attached here as appendix 1, and Dundee centres) whose practice the application notes fall short of that offered by the department of Sleep medicine in
Edinburgh.
A number of queries have been raised in respect of the application and responses sought – these are highlighted where appropriate in the review noting not
all the queries have been answered to date including:
•
Current NoS referrals are not given in the application (this was requested and received as attached pie chart but at point of writing these required further
clarification – specific data has been requested).
•
It is recognised that assessment of numbers is difficult but there is a question over robustness of the data given application notes for example, last year
there were 34 referrals from Greater Glasgow, 2 patients had narcolepsy and 4 a violent Parasomnia (this has been highlighted as a spike last year but
specific data has been requested)
•
NoSPHN would wish to better understand the provision, consistency and quality of current local sleep centres and how a networked approach might
better improve provision in local services.
1. Template abridged from NoSPG paper - Criteria to determine the appropriateness of a Regional Approach
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Whilst in principle the overall premise for the service appears appropriate for a national specialist service (small numbers, specialist expertise) NoSPHN would
seek further clarification of the issues highlighted above and seek reassurance that other models of provision have been fully explored or maximised (eg a
networked approach to maximise those services being provided in the regions) before the a national service is approved.
NoSPG Criteria Questions to determine the appropriateness of regional support for a National service.
Can / could this service continue to be provided
within a Board(s) area?
Not currently provided within NoS Boards (existing sleep Disorder Centres in Dumfries, Glasgow,
Inverness, Aberdeen and Dundee advise they are not able to provide the specialist level assessment and
diagnostic services proposed for these two highly specialised conditions).
Details of the current provision of local services is not stated and remains unclear.
If not, why not?
• Workforce?
• Critical mass?
• Equipment requirements?
• Value for money?
The service is currently provided within NHS Lothian for Lothian patients and for out of area referrals.
Expertise is not available elsewhere in Scotland (with exception of Glasgow University – a research
facility which is not able to provide service described). Services do however exist within the private
sector within Scotland (also in Edinburgh).
Can local Boards support any changes necessary
to support the service?
Referrals will be made by the appropriate specialists practising in the area of sleep, respiratory medicine
and neurology. No direct referrals from general practitioners will be accepted.
Local Boards would refer and treat on advice where appropriate following referral. Boards would be
required to meet the attendant drug costs.
To what extent do (North) Boards need a national
approach?
The specialist service described is not available in the North. NoS specific data is not given (being
sourced) but a likelihood of very small numbers of patients in the NoS – prevalence (quoted) of 0.01% in
the Scottish population.
To what extent will a national approach support
continued delivery in that site?
Expertise already exists as well as facilities in NHSL. A move to a National Specialist Service will support
continued delivery at that site but on a Scotland wide basis – at present service is available to NHSL
patients and out of area referral (application also notes 30 referrals to service in England).
To what extent will a national approach support
delivery in the North?
Clinicians in NoS will refer to the service - this is an assessment and diagnostic service with proposed
networking approach to support local management of condition. Details of the network approach
proposed are not given and would need to be defined in particular shared care protocols etc.
Why
Small numbers – Board / regional approach not appropriate.
is
a
national
approach
geographically
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relevant?
Should this be a national service?
Yes – small numbers.
Is there a possibility / any evidence to suggest
that the North / remote and rural Boards may be
differentially disadvantaged by the proposal (eg
access, costs, use)?
Patients may be disadvantaged by travel to the service (but to note a telecare pilot is being established).
It is intended that any Edinburgh patients will be managed within the designated national service for a
limited period of time. Need to caution against higher level of use by NHSL patients.
Small numbers mean that number of cases in NoS likely to be very small and costs therefore may be
disproportionate.
Is there a possibility / any evidence to suggest
that the North / remote and rural Boards may be
differentially advantaged by the proposal (eg
access, costs, use)?
No
Critical Mass
What critical mass is required to support this
service?
60 referrals expected (30 for each condition) leading to the diagnosis of approximately 3 – 5 new
patients per year with narcolepsy, and approximately 20 new patients per year with a parasomnia.
Quoted prevalence of 0.01% population. It is recognised that assessment of numbers is difficult but
there is a question over robustness of data given application notes for example, last year alone there
were 34 referrals from Greater Glasgow, 2 patients had narcolepsy and 4 a violent parasomnia.
Note also that NoSPHN/ScotPHN asked for clarification on the following:
• The referral criteria for narcolepsy are framed in such as way as anyone with unexplained daytime
tiredness could be referred for assessment. This could result in anyone with – for example - Chronic
Fatigue Syndrome might be referred. This would have a significant impact on referrals which needs
to be reviewed.
The applicants note that the referral criteria are framed as follows: Excessive daytime sleepiness not
otherwise explained by sleep deprivation, shift work, medication abuse, circadian rhythm disorder,
psychiatric illness, OSAHS or medical illness, by definition they consider that medical illness includes
chronic fatigue syndrome. However ScotPHN note that in the absence of regional ME-CFS MDTs of
the type recommended in the ScotPHN HCNA – CFS patients may have a potential to swamp the
system very quickly.
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•
Need clarity on whether referral rates are based on seeing patient once only for assessment and
management advice for local services (need reassurance that pressure will not be built up in system
if patients referred back at later dates).
The applicants note that referral rates are based on initial assessment and diagnosis of the patient.
The national service would provide this, with patients being discharged back to their partent health
boards for further management. They would anticipate only a very small number (not defined) of
patients being continually reviewed in the national service or re-referred.
Could this service be provided regionally / locally
by means of a networked approach?
A networked approach is envisaged to support the care of patients but the application notes that
specialised facilities are required for diagnosis. The case studies attached to the application highlight a
need to better understand the consistency and quality of the provision of regional sleep centres and how
a networked approach would need to ensure improved provision in these services.
Is this service a specialised or categorised as a
tertiary service?
Specialised - in principle (although could be considered tertiary).
Is there capacity potential within the Scotland,
which will support delivery for the whole region?
There is capacity within existing NHSL specialist service to configure as a national service and support
from clinicians in NHS Forth Valley (Psychiatrist) and NHS Tayside (Neurologist) to deliver the service.
NoS specific figures are not given. 30 patients are annually being referred to England for service.
Is there evidence that the service is clinically
effective?
These conditions are so rare that there are no SIGN, NICE or Cochrane publications on the treatments
currently used. The application states that international guidelines are in agreement with the proposed
diagnostic and therapeutic approaches towards patients with suspected narcolepsy and parasomnia.
Application also notes that the unit has contributed significantly to the management and understanding
of patients with narcolepsy and are currently expanding research and audit based strategies for better
managing patients with REM Behavioural Disorder and unusual slow-wave sleep parasomnias.
Patient Impact
What benefits will patients see?
Appropriate assessment and diagnosis. Not needing to travel to England for a service.
What is the expected health gain of the proposal?
The applicants highlight the significant impact a correct diagnosis has on the individual with a sleep
disorder (personal and societal benefits re work, ability to drive, reduction in use of controlled drugs,
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reduction in investigations / inappropriate treatment, employment or legal gains and reducing the risk of
manslaughter and self harm for those with violent parasomnias).
Also savings to the NHS in terms of reduction in unnecessary investigations, clinical attendances, and
treatment costs.
How will a national approach minimise risk?
Appropriate diagnosis and treatment (including high cost of drugs) for patients.
estimated annual ‘misdiagnosis’ of 14 patients.
Application notes
Are the risks increased by a national approach,
how could these be managed?
Not stated.
What will be the health impact of not providing
this service nationally?
If not provided patients across Scotland will not necessarily be able to access the Lothian service, some
patients will be continued to be misdiagnosed (with or without condition), some patients will be referred
to England and presumably some will access the private sector.
Workforce
Can the host Board(s) recruit sufficient staff to
operate this service?
Application states: RLR would lose 2 sessions to be able to devote them to the national service, one of
these sessions possibly coming from sleep. However, as of April 2011, 1 further session in sleep from
Prof Sir Neil Douglas. Thus, there is a no net loss of sessions. Even without this additional session, all
new patients are currently being seen within 11 weeks, thus meeting the 18 week waiting list target.
The application notes they have identified colleagues with the necessary expertise to provide the
neurological and psychiatric input to the service.
What clinical leadership is required?
National
What other disciplines need to be involved?
Specialist sleep, neurology and psychiatry sessions are required to provide supra-specialist diagnostic and
management input to these patients.
Could roles be adopted by other locally /
regionally based staff?
Application notes there are an insufficient number of cases to maintain a local / regional caseload but a
networked approach should seek to maximise the use of existing regional services ensuring appropriate
referrals to a national service.
Could this service be provided locally by means of
a networked approach?
A networked approach to the care of patients in local Boards is proposed. NoSPHN would seek
reassurance that this model and other models of provision have been fully explored or maximised.
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Are there accreditation issues?
-
Resources
What resources are required?
COSTS have been reviewed by the NHS Lothian team and reflect the intention to deliver the proposed
service from within the existing Department of Sleep Medicine at Edinburgh Royal Infirmary. The unit
already has access to 7 dedicated rooms for sleep studies; and to most of the specialist equipment
required. New costs relate to a limited increase in staffing required to minimise impact on the existing
service, and small revenue budget for consumables.
The staffing costs sought are:
Neurology Consultant
0.2 WTE
Psychiatry Consultant
0.1 WTE
Sleep Medicine Consultant
0.2 WTE
Sleep Technician – Grade 6
1.0 WTE
Secretarial/Admin - Band 4
0.2 WTE
TOTAL STAFFING COSTS:
£22,575
£11,287
£22,575
£42,764
£ 4,904
£ 104,105
The running cost per annum, proposed are:
1. Proportion of sleep lab capital costs including maintenance and depreciation of building, computing
facilities and major equipment: £10,000
2. Revenue costs (consumables and night nurse time): £6,200
TOTAL ANNUAL RUNNING COSTS:
TOTAL ANNUAL COST FOR SERVICE:
£ 16, 200
£ 120,305
(these are revised annual costs from an initial application made in May 2011 from original bid for
£159, 500)
Cost per patient of referral to Lothian service of £2,039.
How cost effective is the proposal?
Application states that accurate diagnosis of narcolepsy saves money by:
• Ensuring the expensive (and dangerous) drugs used to treat the condition are only given to the
appropriate patients
• Patients who do not have narcolepsy are appropriately diagnosed and treated.
• Diagnostic delay and inappropriate referral is avoided, freeing up space in other services and
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•
reducing costs by referring to centres outwith Scotland
Additional support including medical, nursing and psychological support and social benefits are
focussed on patients with narcolepsy
Diagnostic delay and inappropriate referral to investigate an ongoing problem is avoided, freeing up
space in other services and reducing costs incurred through referral to centres outwith Scotland, noting
that the cost of such referral is currently borne by the individual NHS Board.
There will be an opportunity, if the service is designated, to market the diagnostic and assessment
service to NHS England. This would allow the national service to offset costs through recharge to the
commissioners in England.
The proposal notes comparative costs of referral to England (annual 30 referrals to England at a cost of
£90k (£3K each and cost of £2,039 of referral to NHSL service).
How will a national approach provide best
value/cost effectiveness?
Unclear given current referral rates by Board are unknown.
What investment is required to sustain the
service?
As above.
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Appendix 1
Additional supporting information received in response to NOSPHN queries.
NHSG support for application
From: [email protected]
To: [email protected]
Date: Wed, 5 Oct 2011 08:54:24 +0100
Subject: RE: NSD bid for narcolepsy and parasomnias
Dear Renata
Thanks for your e-mail and sorry it has been so difficult to get my e-mail address!
I would be very happy to support your bid to have a national referral centre for non OSAS sleep conditions in Edinburgh.
I am grateful to you and Tom for continuing to see occasional such referrals from Aberdeen.
With best regards
Patrick
(Patrick Fitch, Consultant NHS Grampian)
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Percentage of all referrals within Scotland to RIE
diagnosed with Narcolepsy/Violent Parasomnias;
2005-2011
Ayr 10%
Fife 0.7%
GrGlasgow 40%
Lothian 0.6%
Tayside 10%
Borders 0.6%
ForthV 1%
Highlands 7%
Orkney 20%
WesternIs. 6%
Dum/Gal. 6%
Grampian 1%
Lanark 10%
Shetland 20%
Fig.1 above shows the percentage of all referrals to the DSM RIE over 5 years diagnosed or followed up with either narcolepsy or violent parasomnias. The
greatest proportion of referrals was from the Greater Glasgow health board, in spite of a relatively small number of referrals overall. By contrast, although the
number of Lothian patients diagnosed with either condition was highest in absolute numbers, in proportion to the 6000 referrals over the five year period, the
percentage was very low.
Additional referrals were received from Cumbria (6% of all referrals), Belfast (60% of referrals), Morecambe and other areas of England (20% of all referrals),
Northumberland (20% of all referrals).
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