scottish muscle network annual report 2014/15 · national network management service, national...
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Scottish Muscle Network
Annual Report 2014/15
Network Lead Clinician: Marina Di Marco ([email protected] )
Network Co-ordinator: Laura Craig
National Network Management Service,
National Services Scotland, Meridian Court,
5 Cadogan Street, Glasgow, G2 6QE
www.smn.scot.nhs.uk
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Contents
Executive Summary Introduction Aim/ Purpose/ Mission Statement Plans for the year ahead Network Governance Detailed description of progress over the reporting period Appendix 1 – List of Neuromuscular Disorders Appendix 2 – Steering Group Membership Appendix 3 – Steering Group Terms of Reference Appendix 4 – Finance Appendix 5 - Mapping
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1. Executive Summary The Scottish Muscle Network was first established in 1999 and is currently a national managed clinical network funded by NHS National Services Division (NSD). This annual report covers progress in the period April 2014 – March 2015. The Network aims are:
� To raise awareness of neuromuscular disorders � To promote the delivery of an equitable, high quality service to all patients in Scotland with
neuromuscular disorders regardless of where they live The Network Lead Clinician was Marina Di Marco, Principal Neuromuscular Physiotherapist. The Network has a co-ordinator and is overseen by a multidisciplinary steering group. In the following year the Network plans to:
� Continue to hold an annual multidisciplinary educational conference. The next conference is planned for the 4th September 2015 in the Western Infirmary Lecture Theatre, Glasgow. Videoconferencing will make the conference accessible to remote and rural areas.
� Following the success of previous events, the Network will continue to hold “Muscle Interest Group” meetings for discussion and governance of neuromuscular cases and dissemination of medical knowledge.
� Continue to populate the Clinical Audit System (CAS) with patient demographics which will provide us with a patient registry, and going forward, a tool to enable us to audit against our Standards
� Following the success of previous education events for Allied Health Professionals (AHP), we will continue a rolling programme, with the next event planned for April 2015 in Glasgow and a subsequent one in 2016.
� Investigate the opportunities to work more effectively with social care presented by health and social care integration.
� To develop phase II of the Service Description document � Explore the patient experience via interviews, focus groups and questionnaires. � Explore patient satisfaction with current specialist physiotherapy provision in the East and
West. Key successes for the Network in this reporting period were:
� A successful annual multidisciplinary educational conference was held in Larbert in September 2014 with 110 health professionals in attendance.
� A successful AHP event was held in Livingston in May 2014 with approximately 100 AHPs in attendance.
� Muscle Interest Groups, a forum for peer support and education for clinicians who spend a considerable proportion of their time on neuromuscular disorders, continue to be held twice yearly in rotating locations to make them as accessible as possible.
� A successful event for children with neuromuscular disorders and their families was held in September 2014 in conjunction with Scottish Disability Sport.
� A Service Map detailing the current service provision across Scotland
More detailed information is available in Section 6.
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2. Introduction The Scottish Muscle Network (SMN) is a national managed clinical network (NMCN) originally established by Dr Robert McWilliam, Dr Richard Petty and Dr Douglas Wilcox with charitable funding from the Muscular Dystrophy Campaign in July 1999. In subsequent years funding depended on a number of charities including Yorkhill Children’s Foundation, Yorkhill Endowment Fund, Orchid Ball Foundation, Robert Louis Stevenson Trust and the Myotonic Dystrophy Support Group. The SMN, as of 1st April 2014, is now hosted within the National Network Management Service (NNMS), part of the Procurement, Commissioning and Facilities Strategic Business Unit of NHS National Services Scotland. This annual report shows the progress of the Scottish Muscle Network in the period 2014/2015. Managed Clinical Networks In 2002 the Scottish Executive issued NHS HDL (2002) 69 “Promoting the Development of Managed Clinical Networks in NHS Scotland” to confirm their commitment to the development of MCNs. MCNs are defined in the HDL as: Linked groups of health professionals and organisations from primary, secondary and tertiary care, working in a co-ordinated manner, unconstrained by existing professional and health Board boundaries, to ensure equitable provision of high quality clinically effective services throughout Scotland. This HDL also set out a list of core principles for MCNs that must be adhered to. This was reiterated in the HDL (2007) 21 “Strengthening the Role of Managed Clinical Networks”.
3. Aim/Purpose/Mission Statement When the Scottish Muscle Network was established, its main aims were:
� To raise awareness of neuromuscular disorders � To promote the delivery of an equitable high quality service to all patients in Scotland with
neuromuscular disorders regardless of where they live There are many neuromuscular disorders (see Appendix 1) and although they are individually rare they cumulatively account for some 6000 patients in Scotland - prevalence similar to that of Multiple Sclerosis or Parkinson’s Disease. Many shorten life or lead to severe physical disability. They may be inherited or acquired with onset from the neonatal period through to later adult life. 4. Plans for the Year Ahead The Network has a number of ongoing pieces of work detailed in section 6 but have established the following key priorities for the year ahead:
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� The Network will continue to hold an annual multidisciplinary educational conference. The next conference is planned for 4th September 2015 in Western Infirmary Lecture Theatre, Glasgow. Videoconferencing will make the conference accessible to remote and rural areas.
� Following the success of previous events, the Network will continue to hold “Muscle Interest Group” meetings for discussion of neuromuscular cases and dissemination of medical knowledge.
� A programme of education events for Allied Health Professionals will be rolled out, with the next event to be held in Glasgow in 2015, and a subsequent one in 2016.
� The Network will investigate the opportunities to work more effectively with social care presented by health and social care integration.
� The Network will explore the patient experience via interviews, focus groups and questionnaires.
� The Network will explore patient satisfaction with current specialist physiotherapy provision in the East and West.
� The Network will continue to populate the Clinical Audit System (CAS) with patient demographics which will provide us with a patient registry, and going forward, with a tool to enable us to audit against our Standards
� The Network will develop phase II of the Service Description document
5. Network Governance During the period of this report, the Lead Clinician was Marina Di Marco, Principal Neuromuscular Physiotherapist, NHS Greater Glasgow and Clyde. The Network Co-ordinator is Laura Craig with support from Karyn Robertson, Senior Programme Manager. Both previously based at the Network Office in RHSC Glasgow, until their subsequent move to the NNMS at Meridian Court on 1st April 2014. The Network is overseen by a multidisciplinary steering group chaired by Marianne Hayward, Head of Profession for Dietetics, NHS Ayrshire and Arran. A number of network subgroups report to the network steering group and are listed below:
� Paediatric subgroup � Myotonic Dystrophy subgroup � Transition subgroup � Education and Editorial Group � Neuromuscular Physiotherapy Group � Adult subgroup
An information governance framework has been developed and approved by the SMN Steering Group.
6. Detailed Description of Progress Over The Reporting Period The full SMN workplan is shown on page 11 but a few key successes from the period are highlighted in more detail here.
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6.1 Education and Training The Scottish Muscle Network has a programme of education and training which aims to meet the needs of the many professional groups involved. An education and training subgroup has been established in this reporting period to further develop this area. 6.1.1 Annual Multidisciplinary Conference The SMN held its annual multidisciplinary conference on 05th September 2014 in Forth Valley Royal Hospital, Larbert. The conference is aimed primarily at community staff and the largest groups attending this year were from physiotherapy, occupational therapy and nursing backgrounds with a number of doctors and medical trainees also in attendance. There were 110 people attending the venue with additional delegates joining by video conference. Topics covered on the day included:
� Developmental Physiotherapy Role within Neonatology � Skeletal Morbidity In Muscular Dystrophies � Psychological interventions, quality of life and mood in muscle disorders � Orthotic interventions for neurological conditions � Adaptation – hand writing and fatigue � Features and Potential Impact of Communication and Swallowing Difficulties
A summary of the evaluation results are shown below:
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6.1.2 Allied Heath Professional Training Event A training event for allied health professionals was held on 1st May 2014 in St John’s Hospital, Livingston with VC available. The event was attended by a number of allied health professionals who work in the adult sector as the focus for this conference was on adult neuromuscular conditions. Topics covered at the event included:
� Home ventilation � Occupational Therapy and adaptations � Myotonic dystrophy � An overview of the most common medical conditions � Wheelchairs and Seating in the adult services.
6.1.3 Muscle Interest Group Meetings The Muscle Interest Group (MIG) meetings were established to provide a forum for peer support and education for clinicians who spend a significant proportion of their time on neuromuscular disorders. The events are attended by clinicians from neurology, genetics, respiratory, pathology, paediatrics etc. In addition to an opportunity to discuss difficult or undiagnosed cases, a variety of speakers are invited to update on NM disorders. The first event of the 2014/15 period was held on 8th May 2014 in the Suttie Centre, Aberdeen Royal Infirmary with a second event held on 14th November, 2014 in Edinburgh Training & Conference Venue. Further events are planned for 2015:
• 7th May in Perth • 20th November in Glasgow
6.1.4 GP Information Leaflets Following discussions with colleagues in general practice and a meeting with the RCGP, it was agreed the SMN should develop one page summary sheets about a variety of neuromuscular disorders. These would be sent out to GPs when a diagnosis is made and available online. A number of information sheets have been developed and are available from the website. The information sheets currently available are:
� Becker Muscular Dystrophy � Charcot-Marie-Tooth (CMT) � Duchenne Muscular Dystrophy (DMD) � Facio-scapulo-humeral Muscular Dystrophy (FSHD) � Limb Girdle Muscular Dystrophy (LGMD) � Limb Girdle Muscular Dystrophy type 1B (LGMD1B) � Mitochondrial Diseases � Myotonic Dystrophy � Periodic Paralyses
6.2 Patient Involvement In addition to involving patients/ parents in the steering group/ working groups, the SMN has looked at other ways to engage with a wider group of patients.
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6.2.1 Neuromuscular Family Day On 21st September 2014, the SMN held their second Family Fun and Information Day in conjunction with Scottish Disability Sport. The event was held at Grangemouth Sports Complex and was attended by 64 people. Over lunch there was a chance to speak with a number of charities and groups who had information stands at the event. Information sessions were held for parents with topics including:
� Opportunities in disability sport � Assistive technology – an overview from CALL Scotland � Children’s Hospice Association Scotland (CHAS) � Disabled Scouts � Trailblazers Mentoring Scheme in Scotland
Whilst the adults were involved in the information sessions, Scottish Disability Sport had arranged sessions on wheelchair football, athletics and swimming for the young people. Despite the event being successful in terms of feedback from the families, it was disappointing that the numbers of families attending did not strengthen and increase, but in fact had fallen over 20%. The Network agreed not to continue with hosting any further events, as we realised that many of our work streams are effectively being provided by the charities. However, contact with
patients/carers is imperative to maintain to seek their views and feedback and ensure we continue to meet their needs through the work of other sub groups and wider steering group.
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6.2.2 Patient Experience Questionnaires The SMN developed some patient experience questionnaires which will be used at paediatric clinics initially and then rolled out to adult clinics. There is a questionnaire for parents/carers, one for children over 12years of age and one for 12years and under. The pilot of these questionnaires was trialled initially in RHSC, Glasgow with results demonstrating that everyone was pleased with the level of service they received. These results were in contradiction to anecdotal information, therefore we agreed to re-address the question design prior to further roll out. 6.2.3 Patient Centred Marina Di Marco has been instrumental in strengthening links with the Lanarkshire branch of Muscular Dystrophy UK. Ms Di Marco meets with the branch on a regular basis and will continue to liaise with them to provide a two way process of feedback and provision of information. 6.3 Steering Group – Terms of Reference The Terms of Reference document is currently being reviewed. In 2014 /2015 there have been a number of significant changes to the steering group requiring the current terms of steering group membership to be reviewed. This will ensure the document continues to reflect the current and evolving group membership including the membership of the sub groups. (Appendix 3) 6.4 Clinical Audit System Collection of patient demographic information has begun on the Clinical Audit System (CAS), initially with two patient groups – Spinal Muscular Atrophy and Duchenne Muscular Dystrophy. The graphs below illustrate the patient information collected in this reporting period, however, we would emphasize these are not a complete representation of these patient groups, which we will address in the near future.
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Spinal Muscular Atrophy
Duchenne Muscular Dystrophy
SCOTTISH MUSCLE NETWORK MANAGED CLINICAL NETWORK WORKPLAN
2014-2015
Network Aims
• To raise awareness of neuromuscular disorders
• To promote delivery of an equitable high quality service to all patients in Scotland with neuromuscular disorders regardless of where they live
RAG status key
RAG status Description
RED (R) Little/no progress been made to date to achieving network objective/standard
AMBER (A) Significant progress been made to date to achieving network objective/standard, however further work is required to fully achieve the network objective
GREEN (G) The network has been successful in achieving the network objective/standard
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Objective Planned start/end dates
Responsible Description of progress towards meeting objective
Outcome/ evidence
RAG status
1. Patient centred: Providing care that is responsive to individual preferences, needs and values and assuring that patient values guide all clinical decisions.
1.1 Each network should include representation by service users and the voluntary sector in its management arrangements, and must provide them with suitable support in discharging that function (HDL 2007).
Service users and their representatives are included in the membership of the steering group of the Network.
Ongoing Network Manager/ Co-ordinator
Service user and family representatives have been included in the steering group since organisation in 2007. Representatives of the five main charities have been invited to be part of the steering group and the steering group remains open to stakeholder participation
Steering group membership is available on request.
Green
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The Network has a patient/carer action group that includes service users and their representatives. The group meets around four times a year and reports directly to the network steering group on service user views to help inform practice
April – Sep 2014
Patient/Carer Action Group
Paediatric Patient/family event held in Grangemouth Sports Complex on 21st September, 2014. Collaboratively worked with Scottish Disability Sport. The event provides activities for the children and education to the parents/families. This captures user views to feed into the group and help inform future practice and events.
Evaluation available from the MCN office
Green
Disbandment of the Patient/Carer Action group
March 2015
Patient/Carer Action Group
An agreement was reached to disband this sub group as many of our work streams are effectively being provided by the charities in collaboration with the SMN. However,
contact with patients/carers is imperative to maintain to seek their views and feedback and ensure we continue to meet their needs through the work of other sub groups and wider steering group.
Continue to liaise with patient/carers’ through the ongoing work of the sub groups within the SMN.
Green
The Network provides patients with information on how to become involved with the network through leaflets handed out in clinics.
Ongoing Clinicians The leaflet has now been widely distributed with further distribution of SMN “How can we improve our service” postcards.
The leaflet is available in hard copy and an electronic version and is available on the network website.
Green
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1.2 Each Network should develop mechanisms for capturing service users’ and carers’ views, and have a clear policy on dissemination of information to service users and carers, and on the nature of that information (HDL 2007).
The network will develop patient/carer experience questionnaires for use in clinics.
2014-2015 Paeds and Adult sub group
Three questionnaires have been developed for: - Children < 12yrs - Children > 12 yrs - Patient/carer experience Pilot began in RHSC, Glasgow with positive feedback. This did raise some apprehension around the question design, as this was in contradiction to anecdotal information. Agreed to re-address prior to further piloting.
Questionnaire results are available on request.
Amber
The Network will develop patient held records and personal “information packs”. These will include links to up to date information.
2012 and ongoing
Transition Group “Newly Diagnosed Information Pack for DMD” for families with Duchenne Muscular Dystrophy has recently been reviewed and updated. The patient hand held record (Yellow folder) is also undergoing an update and will be distributed shortly.
Information and patient held record packs are available on request.
Amber
Interview patients from different health boards and age groups with Facio-scapulo-humeral Dystrophy (FSHD) to understand their experience
2014/ ongoing
Lead Clinician Interviews are now complete and a report is due for completion in June.
Final report will be available soon
Amber
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Feedback on patient experience interviews to patients and charities
2014/ ongoing
Lead Clinician A presentation to MSP’s at the Cross Party Working Group in February 2015 provided good feedback. Presentation to MD UK is scheduled for October 2015 Presentation to steering group on completed interviews August 2015
Presentation available on web site shortly
Green
Develop and/or adapt a comprehensive range of information materials
2014/ ongoing 2014 / ongoing
Dr Scott Davidson Transition Group
Patient information on “Commercial Air Travel – A handbook for people with neuromuscular weakness” has been developed in conjunction with Muscular Dystrophy UK and now complete. Identify what information materials are currently available from the various charities which we may wish to adopt and/or adapt. This may also identify gaps which the Network could take forward in developing.
Available from the SMN and Muscular Dystrophy websites
Once identified will be taken forward by the appropriate sub group(s)
Green
Amber
Following discussions with the RCGP about primary care needs, the Network will develop one page summary information sheets on various neuromuscular conditions.
2013/ ongoing
Education and Training Group
“at a glance” summary sheets have been completed on 9 conditions.
Available from the website.
Green
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Myotonic Dystrophy Care Card 2013/2015
Myotonic Dystrophy Group
Care Card has been in existence since 2013 and is due for a review. Amendments have been carried out and circulated to the group for final sign off.
Will be available from the website
Amber
Myotonic Dystrophy key ring 2013/2015
Myotonic Dystrophy Group
Alert key ring due for review. Agreed a new style of key ring and awaiting delivery
Will be distributed throughout Scotland via Clinicians
Amber
Individual Care Plan / Admission Sheet
2015 Adult Group A comprehensive document providing information on the needs of the patient to ensure their needs are met whilst in hospital
In final draft awaiting sign off
Amber
The Network will consider new, emerging and currently available medications to ensure our patients’ can be appropriately advised
2015 Paediatric and Adult Subgroups
Consultation between paediatric and adult clinicians, NSD and Scottish Medicines Consortium (SMC) are ongoing to take forward the proposal of the drug Translarna for use in our DMD population
Developing pathway and clinician guidance in collaboration with the drug company and Paediatric sub group. Representation at the UK North Star Forum with regard to the Scottish position is ongoing.
Amber
2. Safe: Avoiding injuries to patients from care that is intended to help them.
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2.1 Develop and promote standards/ guidelines/ protocols (NSD Guidance)
To promote and improve the skills and competencies of the patient group
2014/ ongoing
Lead Clinician Dr Philip Davies
Videos in final production demonstrating passive movements and stretches for patients’ to replicate at home. Dr Davies considering producing a video for his Respiratory patients. Will assess the outcomes from the video as per above prior to a final decision
Will be available shortly from the website If proceeding, will be available from website
Amber Green
Respiratory subgroup will develop evidence based management guidelines and protocols.
Ongoing Respiratory Subgroup
Recently completed a mapping exercise on neuromuscular respiratory services in Scotland. Collating additional information to be added to the website
Will be available from the website
Amber
The Network will work toward an electronic patient alert on (Trakcare) to highlight to the admitting Clinician to contact key members of the neuromuscular team to inform them of their patients’ admission
2015/ ongoing
Adult Subgroup Liaise with Trakcare Team to explore the prospect of having the patient alert available
Provide patients with continuity of care
Green
To develop a generic physiotherapy care pathway for progressive muscle wasting conditions
2015/ ongoing
Physio Group Out for consultation within the Physio group to establish its usefulness
If agreed to develop further will be available from the website and distributed throughout Scotland
Amber
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To develop phase II of the SMN service description document
2015 / ongoing
Lead Clinician Working on the generic complex care pathway for adults and children with a neuromuscular disorder
In draft format and consultation underway with adult and paeds sub group.
Amber
3. Effective: providing services based on scientific knowledge.
3.1 All health professionals in the Network must participate actively in audit and in open review of results (HDL 2002).
Patients with myotonic dystrophy will be offered the opportunity to attend one of the specialist myotonic dystrophy clinics in Glasgow, Edinburgh, Dundee or Aberdeen. The clinics will work to agreed standards and will collect information to allow audit of the standards (also equitable).
Ongoing Myotonic Dystrophy Subgroup
Data continues to be collected in the myotonic dystrophy database. Three audits of the Standards have been completed in 2011, 2012 and 2013. A further audit due to be carried out in latter part of 2015
Audit results will be available from the MCN office
Amber
The Network will work to agreed standards for the paediatric management of Duchenne Muscular Dystrophy (also equitable).
Ongoing Paediatric Subgroup
Standards due for review at next meeting of group in May 2015
Updated version will soon be available from the SMN website.
Amber
Retrospective audit of all adult DMD patients who have not had Spinal surgery
2014/ ongoing
Paediatric Subgroup
Audit underway by Dr Kenneth Kohr in collaboration with Dr. Karen Naismith. Results from the North of Scotland have been collated and West of Scotland currently underway
Audit results will be available from the MCN office
Amber
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Retrospective audit of current prescription trends of steroid therapy in non-ambulant DMD
2014 / 2015 Dr. Karen Naismith
Audit of 17 centres around the UK and presented at the North Star meeting in London May 2015
Presentation available on the web site
Green
Research Study on ScOT- DMD (Secondary Osteoporosis and its Therapy in Duchenne Muscular Dystrophy)
2015/2017 Dr Shuko Joseph Recruitment of DMD patients aged 5-16yrs onto a 2year prospective study to assess feasibility of a future bone protection clinical trial and to better inform future bone health surveillance programme.
Study will commence in August 2015
Green
The Network has successfully submitted a number of posters at international conferences
2014/2015 All clinicians Clinicians have travelled to Berlin, London and Paris to present posters on the work carried out in Scotland throughout the past year.
Posters on a variety of subjects have been submitted and are available on the web site
Green
4. Efficient: Avoiding waste, including waste of equipment, supplies, ideas and energy.
4.1 Networks’ education and training potential should be used to the full, in particular through exchanges between those working in the community and primary care and those working in hospitals or specialist centres (HDL 2007).
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The Network runs an annual educational meeting for professionals from around Scotland to ensure they are kept up to date on the latest information/ developments on neuromuscular disorders. The conference is held at different venues around Scotland to enable as many professionals as possible to attend (also equitable).
Ongoing Education and Training Subgroup
The Annual Conference will be held on 4th September in the Western Infirmary Lecture Theatre, Glasgow. Speakers are being identified and programme will be available shortly
Advertised on SMN website. Programme will be disseminated and available from the website
Amber
The Network provides a forum for the dissemination of medical knowledge and for the discussion of problematic, instructive and challenging cases with clinical specialists from around Scotland and Ireland (also equitable).
Ongoing Network Co-ordinator
Event held on 15th November in Edinburgh Training & Conference Venue. Next event confirmed for 7th May, 2015 in Queens Hotel, Perth. Future event confirmed for 20th November in Glasgow. Venue to be confirmed
Programme and evaluation available on request.
Green
The Network runs an annual educational meeting for Allied Health professionals from around Scotland to ensure they are kept up to date on the latest information/ developments on neuromuscular disorders.
Ongoing Lead Clinician / Physio Group
Successful event held in Sir Charles Wilson building, Glasgow, on 20th April, 2015. Future Event 2016 Date, venue, speakers and programme to be identified
Evaluation results available from the MCN Office Evaluation results will be available from the MCN office after the event
Green Green
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4.2 Each Network must have a defined structure that sets out the points at which the service is to be delivered, and the connections between them. This will usually be achieved by mapping the journey of care (HDL 2007).
Evaluate the adult physiotherapy service in the East and West of Scotland
2014/ ongoing
Physio Group Prior to carrying out the evaluation process, it was agreed it would be useful to set up small focus groups in the 2 regions to ensure we capture service users feedback which will provide us with quantitative information. Focus Group in East carried out in August 2014. Focus Group in West due to be carried out in May 2015
Document will be developed
Amber
4.3 Clinical Audit System – Data collection
Agree data collection, audit and research to provide a basis for further service improvement and in monitoring clinical outcomes
2014/ ongoing
Paediatric Subgroup
Collection of demographic information on DMD and SMA patients is almost complete. Additional patient groups to follow
Data will be continually be populated into the Clinical Audit System (CAS).
Amber
5. Equitable: Providing care that does not vary in quality because of personal characteristics such as gender, ethnicity, geographical location or socio-economic status.
5.1 Each Network must have a defined structure which sets out the points at which the service is to be delivered and the connections between them (HDL 2007).
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Discuss with local clinicians in each area to identify current services and pathways for patients with neuromuscular disorders across Scotland.
2014/ ongoing 2014/ ongoing
Lead Clincian/ Network Co-ordinator Lead Clinician/ Adult & Paediatric Sub groups
A comprehensive “Service Map” of neuromuscular services in Scotland has been produced. This is sent to all colleagues identified on the map every 2 months to ensure its accuracy. To complement the Service Map, a detailed Service Description will be produced which will describe both the most complex paediatric and adult patient journey
Will soon be available from the website Work streams due to take place at next meetings of the sub groups to take this forward
Amber Amber
Develop a proforma for the Transitioning period
2014/ ongoing
Transition Subgroup
Infancy stages of producing a proforma which will assist in the transition process to adult services. This is being undertaken in collaboration with the adult sub group.
Dr Davidson is exploring the virtual transition model and will work towards piloting this in 2016.
Amber
Streamline and redesign the Network website to ensure ease of use
2014/ ongoing
Editorial Subgroup
Re-assessing what is currently available and identifying through network members what other documentation / links should be added. NSS is undergoing a website estate redesign, therefore no further redesign from the Network until further notice.
www.smn.scot.nhs.uk Amber
6. Timely: Reducing waits and sometimes harmful delays for both those who receive care and those who give care.
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Network agendas and papers will be distributed one week before meetings and minutes will be circulated within three weeks of the meeting.
Ongoing Network Co-ordinator
A process is followed in order to meet the recommended timescales of circulation of papers and agendas
A database is held of the dates of circulation and an audit report can be produced on request.
Green
Appendix 1 – Neuromuscular Disorders
All genetic and acquired disorders where primary pathology is thought to arise in muscle. We also cover inherited disorders of anterior horn cells (with exception of Motor Neurone Disease) and peripheral nerve disease (Charcot Marie Tooth disease). The range of disorders addressed is therefore changing with medical advance but the overall prevalence approaches that of MS and Parkinson’s disease at circa 100/100,000. The range is indicated in the table below.
Diagnostic Group Common examples
Muscular Dystrophy (MD) Duchenne and Becker muscular dystrophy Facio-scapulo-humeral muscular dystrophy
Oculopharyngeal muscular dystrophy
Dysferlinopathy Other defined dominant and recessive muscular dystrophy
Congenital Muscular
Dystrophy
Ullrich CMD
Merosin-negative CMD
Dystroglycanopathy
Any undiagnosed with onset < age 1y
Congenital Myopathy Nemaline myopathy
Myotubular/Centronuclear myopathies
Central core disease
Minicore /Multi-mini core myopathy
Congenital fibre type disproportion Any undiagnosed myopathy with onset < age 1y
Distal Myopathy including the myofibrillar myopathies
Other myopathy Inclusion body myositis Inflammatory myopathy
Dermatomysitis
Myotonic syndromes Myotonic Dystrophy types 1 and 2
Schwartz-Jampel syndrome
Ion channel disease Myotonia/Paramyotonia Congenita
Anderson syndrome
Periodic paralysis
Metabolic Pompe’s disease (acid maltase deficiency)
McArdle’s disease CPT2 deficiency
Congenital myasthenia Slow/fast channel syndrome
Spinal Muscular Atrophy Classical (SMN related) SMA eg Types I,II,III Kennedy’s disease
HMSN/CMT CMT (Charcot-Marie-Tooth disease, same as HMSN)
Other neuromuscular All mitochondrial disorders with clinical myopathy Distal arthrgryposis
A comprehensive list of genetic diagnoses within the field of neuromuscular diseases is available
at: http://www.musclegenetable.org/
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Appendix 2 – Steering Group Membership
Marianne Hayward (Chair) Head of Profession for Dietetics NHS Ayrshire and Arran
Dr Karen Naismith Consultant Paediatrician NHS Tayside
Dr Iain Horrocks Consultant Paediatric
Neurologist
NHS GGC
Dr Cheryl Longman Consultant Geneticist NHS GGC
Marina Di Marco Lead Clinician and Principal
Neuromuscular Physiotherapist
NHS GGC
Dr Helen Gregory GP / Geneticist NHS Grampian
Dr Richard Petty Consultant Neurologist NHS GGC
Dr Alex Baxter Consultant Paediatrician NHS Lothian
Laura Craig Network Co-ordinator NHS National Services Scotland
Yvonne Robb Genetic Neuromuscular Nurse Specialist
NHS Lothian
Gillian Paton Liaison Nurse visor East of Scotland
Karyn Robertson Senior Programme Manager NHS National Services Scotland
Dr Maria Farrugia Consultant Neurologist NHS GGC
Dr Anthony Bateman Consultant in Critical Care and
Genetics
NHS Lothian
Wilma Stewart Regional Care Advisor West of Scotland
Dr Scott Davidson Consultant Respiratory
Physician
NHS GGC
Lynne Rule Occupational Therapist NHS Tayside
Dr Philip Davies Consultant Respiratory
Paediatrician
NHS GGC
Jennifer Dunne Neuromuscular Clinical Nurse Specialist
NHS GGC
Keith Farrer Programme Manager
North of Scotland Planning
Group
Dr Shuko Joseph Research Fellow NHS GGC
Fiona Monaghan Orthotist NHS Borders
Faye Chappell Regional Neuromuscular
Paediatric Physiotherapist
NHS Grampian
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Appendix 2 – Steering Group - Terms of Reference
1. Name of Group
Steering Group of Scottish Muscle Managed Clinical Network
2. Purpose of Group
To provide a multi disciplinary, multi agency and geographical representation of the views of the network members.
3. Remit
� To agree the strategic direction of the Network and annual programmes of work
� To review and comment on the work of the sub groups � To review and comment on any network documentation � To represent network members � To ensure public and patient involvement
4. Frequency of Meetings
Twice yearly with e-mail contact in between. Small groups of members may be called together in between meetings if an issue arises where their expertise is needed. This will be at the discretion of the Lead Clinician.
5. Membership of Group
Representatives from: � Paediatrics/ Paediatric Neurology � Neurology � Genetics � Home ventilation � Cardiology � Spinal surgery � Physiotherapy � Social work � Care Advisors � Voluntary Organisations � Patient/Parent/Carer Representatives
Chair:
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Secretariat: MCN Manager and Administrator
6. Member’s Rights and Responsibilities
� Members will be expected to attend meetings regularly and take responsibility for actions agreed at meetings.
� Members should observe collective responsibility for Committee decisions. � They will communicate information to and from the organisation, discipline or
constituency they represent where it is appropriate. � When information discussed is of a sensitive or confidential nature, members
will be expected not to discuss the information outside of the meeting. If members are unsure of the status of the information they should contact the secretariat.
� Members should not speak or write on behalf the SMN without prior agreement. Any correspondence that a member has with other bodies as a private individual should make no reference to being a member of the steering group.
� Named individuals should not be discussed in this forum but should the identity of an individual be known to members of the group due to rarity of condition etc. members are expected to keep the information strictly confidential.
� Members are expected to follow the Code of Conduct below.
Service users and their representatives should see also additional section.
7. Format of Meetings An agenda and any additional papers for the meeting will be circulated by the secretariat at least one week before the meeting. Copies will be provided by the secretariat at the meeting. The secretariat should be notified of any items members would like added to the agenda two weeks before the meeting. The following items will be considered standing items on every agenda:
� Report from the chair of each of the network subgroups on progress since the previous meeting
� Report on any issues raised by the patient involvement group � Financial statement
A quorum of 10 members will be required to take decisions on behalf of the steering group. Where a vote is required the majority decision will carry. Refreshments will be provided. Minutes of the meeting will be circulated by the secretariat within 1 month of the meeting.
28
8. Code of Conduct at Meetings Members of the group should abide by the following code of conduct:
� Members of the group should follow the guidance of the Chair in the conduct of the meeting. The Chairperson’s decision is final on all matters relating to the running of the meeting.
� Members should be courteous to each other at all times and allow each other to speak. When a number of members wish to speak on a topic, the Chair will direct the discussion. When the Chair considers that all of the discussion on a topic has been heard, they will move on to a decision/ next topic.
� Members must remember that the purpose of the meeting is to benefit neuromuscular patients generally and not specific individuals.
� If members do not follow the code of conduct the Chair will ask them to leave the meeting. Continuous failure to observe the code of conduct will result in removal from the group.
9. Tenure
Membership of the group will be for a three year period at which point the secretariat will contact the member to ascertain whether they would like to continue in this post.
10. Public Involvement Patients and patient representatives will be invited to attend meetings and participate in any discussion/decisions.
I have read and agree to abide by the Terms of Reference of the Scottish Muscle Network Steering Group. Name:…………………………………………………………………. Designation:……………………………………………………….. Signature:………………………………………………………………………………… Date:……………………………..
11. Reporting Line
Reports to the National Services Division (NSD), Scottish Government, Health Boards and Regional Planning Groups.
29
Appendix 4 – Finance Annual budget from NSD £5,000
Description Amount
Network Meetings £ 548.00
Family Event £ 779.00
Travel £ 68.00
Education Events £2122.00
TOTAL £3517.00
MAPPING OF NEUROMUSCULAR SERVICES IN SCOTLAND
West of Scotland : Neuromuscular Services - PAEDIATRIC
Health
Board
Area
DGH Regional
Service
Paediatrician
/ Paediatric
Neurologist
Respiratory Cardiology /
Anaesthetics
Physio-
therapy
Neuro-
muscular
Specialist
Nurse
Neuromusc
ular Care
Adviser/
Support
Services
Genetics Neuro-
physiolo
gy
DM Service Neuro-
pathology
AHP /
Other
Ayrshire
and Arran
Crosshouse
Hospital,
Rainbow
House
Yorkhill
Hospital Dr Nuno
Cordeiro / D.
Iain Horrocks /
Dr Phil
Davies ,
Yorkhill
Hospital
Dr Patrick
Noonan
Dr Ben Smith
(Glasgow)
Dr Maria Ilina
(Glasgow)
Dr. Jon Staines
(Ayrshire)
Fiona Gaffney
David Cassels
Marina Di
Marco
Jen Dunne Wilma
Stewart
(NCA)
Dr Cheryl
Longman
Lesley
Snadden
Dr Iain
Horrocks
Dr Nuno
Cordeiro
Dr William
Stewart Clinical
Psychologist
Alan S.
James
Rachel
Mochrie
(Dietitian)
Forth Valley Forth valley
Royal
Hospital
Royal
Infirmary
Yorkhill
Hospital Dr Ishaq Abu-
Arafeh / Dr Iain
Horrocks
Dr Phil
Davies ,
Yorkhill
Hospital
Dr Ben Smith Rachael
Livingston
Kendra Cleland
Marina Di
Marco
Jen Dunne Wilma
Stewart
(NCA)
Dr Cheryl
Longman
Lesley
Snadden
Dr Iain
Horrocks
Dr Ishaq
Abu-Arafeh
Dr William
Stewart Rachel
Mochrie
(Dietitian)
Greater
Glasgow
and Clyde
Yorkhill
Hospital
Yorkhill
Hospital Dr Iain
Horrocks
Dr Phil
Davies
Dr. Maria Ilina /
Dr Ben Smith
Marina Di
Marco
Sarah Brown
Susanne
McKenzie
Jen Dunne Wilma
Stewart
(NCA)
Dr Cheryl
Longman
Lesley
Snadden
Dr Iain
Horrocks
Dr Iain
Horrocks
Dr William
Stewart Rachel
Mochrie
(Dietitian)
Greater
Glasgow
and Clyde
Inverclyde
Hospital,
Panda
Centre
Yorkhill
Hospital Dr Iain
Horrocks
Dr Lesley Nairn
Dr Phil
Davies
Dr Maria Ilina/
Dr Ben Smith
Marina Di
Marco
Sarah Brown
Susanne
McKenzie
Jen Dunne Wilma
Stewart
(NCA)
Dr Cheryl
Longman
Lesley
Snadden
Dr Iain
Horrocks
Dr Iain
Horrocks
Dr William
Stewart Rachel
Mochrie
(Dietitian)
Lanarkshire Wishaw
General
Hospital
Yorkhill
Hospital Dr Mary
Callaghan / Dr
Iain Horrocks
Dr Phil
Davies / No
identified
local service
Dr Maria Ilina /
Dr Ben Smith
Jane Miller
Sheila Milligan
Marina Di
Marco
Jen Dunne Wilma
Stewart
(NCA)
Dr Cheryl
Longman
Lesley
Snadden
Dr Iain
Horrocks
Dr Mary
Callaghan /
Dr Iain
Horrocks
Dr William
Stewart
Dumfries
and
Galloway
DGH Royal
Infirmary/
Galloway
Community
Hospital
Yorkhill
Hospital No identified
local service /
Dr Iain
Horrocks
Dr Phil
Davies / No
identified
local service
Dr Maria Ilina Marina Di
Marco
Jen Dunne Wilma
Stewart
(NCA)
Dr Cheryl
Longman
Lesley
Snadden
Dr Iain
Horrocks
Dr Iain
Horrocks
Dr William
Stewart
Highland
and Argyll
Lorn and
Islands
Hospital,
Oban
Yorkhill
Hospital Dr Jamie
Houston / Dr
Iain Horrocks
Dr Phil
Davies / No
identified
local service
Marina Di
Marco
Liz Taylor
Jen Dunne Wilma
Stewart
(NCA)
Dr Cheryl
Longman
Lesley
Snadden
Dr Iain
Horrocks
Dr Iain
Horrocks
Dr William
Stewart
Appendix 5 – Mapping
31
West of Scotland : Neuromuscular Services - ADULT
Health
Board
Area
DGH Regional
Service (Neuro
only)
Neurologis
t
Respiratory Cardiology /
Anaesthetics
Physio-
therapy
Neuro-
muscular
Specialist
Nurse
Care
Adviser
Genetics Neuro-
physiology
DM
Service
Neuro-
pathology
AHP / Other
Ayrshire
and Arran
Ayrshire
Central
Hospital,
Douglas Grant
Rehab Centre
Southern
General
Hospital
Dr Richard
Petty
Dr Maria
Farrugia
Dr. D. Sword
Dr Scott
Davidson
Dr. Iain Findlay Marina Di
Marco
Douglas
Grant Rehab
Centre
Wilma
Stewart
Dr. C. Longman
Dr. V. Murday
Lesley Snadden
Dr. Arup
Mallik Dr. Anne
McKeown
Dr.
Monica
Rahman
Dr W. Stewart Douglas Grant
Rehab Centre:
June Milligan
(Dietitian)
Alison Clarke
(Breathing
Support
Forth
Valley
Forth Valley
Royal Infirmary
Southern
General
Hospital
Dr. Suvanker
Pal /Dr
Richard
Petty/
Dr Maria
Farrugia
Dr. Scott
Davidson
Dr. Iain Findlay Marina Di
Marco
Wilma
Stewart
Dr. C. Longman
Dr. V. Murday
Lesley Snadden
Dr. Anne
McKeown
Dr.
Monica
Rahman
Dr W. Stewart Shona Hogg
(REACH Team)
Alison Clarke
(Breathing
Support
Greater
Glasgow
and Clyde
Southern
General
Hospital
Southern
General
Hospital
Dr Richard
Petty
Dr Maria
Farrugia
Dr Scott
Davidson
Dr. Iain Findlay
Dr David
Murdoch
Dr J. Byrne
Marina Di
Marco
Caroline
Carmichael
(MG /FSH)
Wilma
Stewart
Dr. C. Longman
Dr. V. Murday
Lesley Snadden
Dr. Arup
Mallik Dr. Anne
McKeown
Dr.
Monica
Rahman
Dr W. Stewart Alison Clarke
(Breathing
Support)
Greater
Glasgow
and Clyde
Inverclyde
Royal
Hospital
Southern
General
Hospital
Dr Richard
Petty
Dr Maria
Farrugia
Dr. Scott
Davidson
Dr. Iain Findlay Marina Di
Marco
Caroline
Carmichael
(MG/FSH)
Wilma
Stewart
Dr. C. Longman
Dr. V. Murday
Lesley Snadden
Dr. Arup
Mallik Dr. Anne
McKeown
Dr.
Monica
Rahman
Dr W. Stewart Alison Clarke
(Breathing
Support)
Lanarkshire Wishaw
General
Hospital
Southern
General
Hospital
Dr Richard
Petty
Dr Maria
Farrugia
Dr. K. Dagg
Dr. Scott
Davidson
Dr. Iain Findlay Marina Di
Marco
Wilma
Stewart
Dr. C. Longman
Dr. V. Murday
Lesley Snadden
Dr. Arup
Mallik Dr. Anne
McKeown
Dr.
Monica
Rahman
Dr W. Stewart Alison Clarke
(Breathing
Support)
Dumfries
and
Galloway
DGH Royal
Infirmary/
Galloway
Community
Hospital
Southern
General
Hospital
Dr Richard
Petty
Dr Maria
Farrugia
Dr Scott
Davidson
Dr. Iain Findlay Marina Di
Marco
Wilma
Stewart
Dr. C. Longman
Dr. V. Murday
Lesley Snadden
Dr. Anne
McKeown
Dr.
Monica
Rahman
Dr W. Stewart Alison Clarke
(Breathing
Support)
Highland
and Argyll
Lorn and
Islands
Hospital, Oban
Southern
General
Hospital
Dr Richard
Petty
Dr Maria
Farrugia
Dr. Scott
Davidson
Dr. Iain Findlay Marina Di
Marco
Dr. C. Longman
Dr. V. Murday
Lesley Snadden
Dr. Arup
Mallik
Dr. Anne
McKeown
Dr.
Monica
Rahman
Dr W. Stewart Alison Clarke
(Breathing
Support)
32
East of Scotland : Neuromuscular Services - PAEDIATRIC
Health
Board
Area
DGH Regional
Service
Paediatrician
/ Paediatric
Neurologist
Respiratory Cardiology /
Anaesthetics
Physio
therapy
Neuro-
muscular
Specialist
Nurse
Care
Adviser
Genetics Neuro-
physiology
DM
Service Neuro-
pathology
AHP /
Other
Borders Borders
General
Hospital
Royal
Hospital
for Sick
Children,
Edinburgh
Dr. K.
McWilliam
Dr. Alex Baxter
/Dr John
Stephen
Dr Don
Urquhart
Dr Kenny
McLeod
Dr Steve
Cunningham
/Dr
Catherine
Mc Dougall
Dr. Dzung
Dr. M. Walayat
Jacky Yirrell Yvonne
Robb
(Neuro-
muscular
Genetics)
Gill Paton Dr. C. Longman Dr.G. Moran Yvonne
Robb
Dr Antonia
Torgensen
(Edinburgh
Linda
McCarthy
(Ventilation
Nurse
Specialist)
Fife Victoria
Hospital /
Queen
Margaret
Hospital
Royal
Hospital
for Sick
Children,
Edinburgh
Dr. K.
McWilliam
Dr. Jamie
Cruden
/Dr.Robert
Humphreys
Dr. Dzung
Dr. M. Walayat
Jacky Yirrell Yvonne
Robb
(Neuro-
muscular
Genetics)
Gill Paton Dr. C. Longman Dr.G. Moran
Dr. Eleonara
Saturno
Yvonne
Robb
Dr Antonia
Torgensen
(Edinburgh
Linda
McCarthy
(Ventilation
Nurse
Specialist)
Lothian Royal
Hospital for
Sick
Children,
Edinburgh
Royal
Hospital
for Sick
Children,
Edinburgh
Dr. K.
McWilliam
Dr Alex Baxter
Dr. Dzung
Dr. M. Walayat
Jacky Yirrell Yvonne
Robb
(Neuro-
muscular
Genetics)
Gill Paton Dr. C. Longman Dr.G. Moran Yvonne
Robb
Dr Antonia
Torgensen
(Edinburgh
Linda
McCarthy
(Ventilation
Nurse
Specialist)
East of Scotland : Neuromuscular Services - ADULT
Health
Board
Area
DGH Regional
Service
Neurologist Respiratory Cardiology /
Anaesthetics
Physio-
therapy
Neuro-
muscular
Specialist
Nurse
Neuromus-
cular Care
Adviser /
Support
Services
Genetics Neuro-
physiology DM
Service
Neuro-
pathology
AHP / Other
Borders Borders
General
Hospital
Western
General
Hospital
Dr David
Simpson
Dr Anthony
Bateman
Dr S
McLellan
Dr Kalliroi
Kefala
Dr Neary
Dr Anthony
Bateman
(Anaesthetics)
Post
vacant -
Awaiting
Appoint-
ment
Yvonne Robb
(Neuro-
muscular
Genetics)
Gill Paton
(NCA)
Dr C
Longman /
Yvonne Robb
Dr G Moran Yvonne
Robb
Dr Antonia
Torgersen
(Edinburgh)
B. Forrest
/Colin
McPherson /
Claire Hogg /
Marian
Dingwall / Alina
Macleod
Dr. Stewart
Donald (Astley
Ainslie)
Dr Lance Sloan
(Rehab Team,
Fife)
Fife Victoria
Hospital,
Kirkcaldy
Western
General
Hospital
Dr Martin
Zeidler
Dr C Mark Francis
Dr Anthony
Bateman
(Anaesthetics)
Yvonne Robb
(Neuro-
muscular
Genetics)
Gill Paton
(NCA) Dr C
Longman /
Yvonne Robb
Dr Eleonora
Saturno
Yvonne
Robb
Dr Antonia
Torgersen
(Edinburgh)
Lothian Western
General
Hospital / St
John’s Hospital,
Livingston
Western
General
Hospital
Dr Richard
Davenport
Dr Martin Denvir
Dr A Bateman
(Anaesthetics)
Yvonne Robb
(Neuro-
muscular
Genetics)
Gill Paton
(NCA)
Dr C
Longman /
Yvonne Robb
Dr G Moran Yvonne
Robb
Dr Antonia
Torgersen
(Edinburgh)
Lothian Edinburgh
Royal Infirmary
Edinburgh
Royal
Infirmary
Dr T Mackay Dr Martin Denvir
Dr Anthony
Bateman
(Anaesthetics)
Yvonne Robb
(Neuro-
muscular
Genetics)
Gill Paton
(NCA)
Dr C
Longman /
Yvonne Robb
Dr G Moran Yvonne
Robb
Dr Antonia
Torgersen
(Edinburgh)
33
North of Scotland : Neuromuscular Services - PAEDIATRIC
Health
Board
Area
DGH Regional
Service
Paediatrician
/ Paediatric
Neurologist
Respiratory Cardiology /
Anaesthetics
Physio-
therapy
Neuro-
muscular
Specialist
Nurse
Neuromus-
cular Care
Adviser
/Support
Genetics Neuro-
physiology
DM Service Neuro-
pathology
AHP / Other
Grampian
(Aberdeen
& Moray)
Royal
Aberdeen
Children’s
Hospital
Royal
Aberdeen
Children’s
Hospital
Dr Ayaz. Shah
Dr Martin
Kirkpatrick
Dr Ann O’Hara
Dr A Jollands
Dr Elma
Stephen
Dr Richard
Brooker
Dr Mustafa
Osman
Dr Detlev
Rogahn
Dr Richard
Brooker
Faye Chappell /
Jane Tewnion
Support
services are
being met
locally
through
paediatric
teams,
District
Nursing
services,
AHP’s and
GP services.
A more
informed
pathway is
currently a
work in
progress.
Dr Alison
Ross
Dr Helen
Gregory
Dr Cheryl
Longman
Dr Alan
Forster
(Aberdeen)
Dr Ayaz Shah
Dr Martin
Kirkpatrick
Dr Ann
O’Hara
Dr Alice
Jollands
Dr Antonia
Torgersen
(Edinburgh)
Grampian
(Aberdeen
& Moray)
Dr. Gray’s
Hospital,
Elgin
Royal
Aberdeen
Children’s
Hospital
Dr Ayaz. Shah
Dr Martin
Kirkpatrick
Dr Ann O’Hara
Dr Alice
Jollands
Dr Elma
Stephen
Dr Richard
Brooker
Dr Mustafa
Osman
Dr Detlev
Rogahn
Dr Richard
Brooker
Faye Chappell Dr Alison
Ross
Dr Helen
Gregory
Dr C
Longman
Dr Alan
Forster
(Aberdeen)
Dr Ayaz Shah
Dr Martin
Kirkpatrick
Dr Ann
O’Hara
Dr Alice
Jollands
Dr Antonia
Torgersen
(Edinburgh)
Highland Raigmore
Hospital
Inverness
Royal
Aberdeen
Children’s
Hospital
Dr Martin
Kirkpatrick
Dr Linda
MacLellan
Dr. Richard
Brooker
RHSCE Resp
Team
Yorkhill Resp
Team
Dr. Walayat Faye Chappell
Julie Burslem Dr Alison
Ross Dr
Helen
Gregory
Dr C
Longman
Dr Patrick
Fox
(Raigmore)
Dr Martin
Kirkpatrick
Dr Linda
McLellan
Dr Antonia
Torgersen
(Edinburgh)
Orkney Balfour
Hospital
(RGH)
Royal
Aberdeen
Children’s
Hospital
Dr Alice
Jollands
Dr Detlev
Rogahn
Dr Richard
Brooker
Faye Chappell Dr Alison
Ross Dr Zosia
Miedzybrodz
ka
Dr Alan
Forster
(Aberdeen)
Dr Antonia
Torgersen
(Edinburgh)
Shetland Gilbert Bain
Hospital,
Lerwick
Royal
Aberdeen
Children’s
Hospital
Dr Martin
Kirkpatrick
Dr Susan Bowie
Dr Detlev
Rogahn
Dr Richard
Brooker
Faye Chappell Dr John
Dean
Dr Cheryl
Longman
Dr Alan
Forster
(Aberdeen)
Dr Antonia
Torgersen
(Edinburgh)
Tayside
(Perth,
Angus,
Dundee and
NE Fife)
Ninewells,
Hospital,
Armitstead
Child
Developmen
t Centre,
Perth Royal
Infirmary
Ninewells,
Hospital
Dr Karen
Naismith
Dr Martin
Kirkpatrick
Dr Ann Scott
(Neuro-
disability)
Dr Jonathan
McCormick /
Edinburgh
Home Vent
service
Dr K MacLeod
Dr Walayat
(Cardiology)
Dr Grant
Rodney
(Anaesthetics)
Faye Chappell
Jennifer
Dalgleish
(Dundee)
Lynn
Willox
Dr Catherine
McWilliam
Dr Cheryl
Longman
Dr Karen
Naismith
Dr Martin
Kirkpatrick
Dr Ann Scott
Dr Antonia
Torgersen
(Edinburgh)
Lynne Rule (OT)
Louise Taylor
(Dietitian)
Western
Isles
Western
Isles Hospital
RHSC,
Glasgow
Dr Iain
Horrocks
Dr Phil
Davies
Marina Di
Marco Jen Dunne Wilma
Stewart
(NCA)
Dr Alison
Ross
Dr Arup
Mallik
(Glasgow)
Dr Iain
Horrocks
(Glasgow)
Dr W
Stewart
(Glasgow)
34
North of Scotland : Neuromuscular Services - ADULT
Health Board
Area
DGH Regional
Service
Neurologist
/ Rehab
Consultant
Respiratory Cardiology /
Anaesthetics
Physio
therapy
Neuro-
muscular
Specialist
Nurse
Neuromus-
cular Care
Adviser/
Support
Genetics Neuro-
physiology
DM Service Neuro-
pathology
AHP / Other
Grampian
(Aberdeen &
Moray)
Aberdeen Royal
Infirmary
Aberdeen
Royal
Infirmary
Dr Gillian
Hall
Dr A Cozens
Dr Patrick
Fitch / Dr Joy
Miller
Prof Michael
Frenneaux
Dr Paul
Broadhurst
No specialist
service
(Referral to
local adult
PT)
Susan
Stewart
(Genetic
Specialist
Nurse
Dr A Ross
Dr Helen
Gregory
Dr Alan
Forster
(Aberdeen)
Dr Gillian
Hall
Dr Helen
Gregory
Dr Antonia
Torgersen
(Edinburgh)
Jacqueline
Burnett / Jenny
Robinson (PT’s)
Claire
Fitzsimmons
(OT), Rhoda
Downey (SLT)
Susan Stewart
(Genetic
Specialist
Nurse)
Grampian
(Aberdeen &
Moray)
Dr. Gray’s
Hospital, Elgin
Aberdeen
Royal
Infirmary
Dr Gillian
Hall
(Grampian)
Dr A Cozens
Dr. Patrick
Fitch / Dr Joy
Miller
Prof Michael
Frenneaux
Dr Paul
Broadhurst
No specialist
service
(Referral to
local adult
PT)
Susan
Stewart
(Genetic
Specialist
Nurse
Dr A Ross
Dr Helen
Gregory
Dr Alan
Forster
(Aberdeen)
Dr H Gregory Dr Antonia
Torgersen
(Edinburgh)
Highland Raigmore
Hospital
Inverness
Raigmore
Hospital
Inverness
Dr K Taylor
Dr A Cozens
Dr Lorna
Murray
Dr Stephen
Cross
No specialist
service
(Referral to
local adult
PT)
Susan
Stewart
(Genetic
Specialist
Nurse
Dr A Ross
Dr Helen
Gregory
Dr Patrick
Fox
(Raigmore)
Dr K Taylor
Dr H Gregory
Dr Antonia
Torgersen
(Edinburgh)
Susan Stewart
(Genetic
Specialist
Nurse)
Orkney Balfour
Hospital (RGH)
Aberdeen
Royal
Infirmary
No specialist
service
(Referral to
local adult
PT)
Susan
Stewart
(Genetic
Specialist
Nurse
Dr Zosia
Miedzybrodz
ka Dr Alison
Ross
Dr Alan
Forster
(Aberdeen)
Dr Antonia
Torgersen
(Edinburgh)
Susan Stewart
(Genetic
Specialist
Nurse)
Shetland Gilbert Bain
Hospital,
Lerwick
Aberdeen
Royal
Infirmary
/ Perth
Royal
infirmary
Dr Jim
Unsworth
(Consultant
Physician)
No specialist
service
(Referral to
local adult
PT)
Susan
Stewart
(Genetic
Specialist
Nurse
Dr John
Dean
Dr Alan
Forster
(Aberdeen)
Dr Jim
Unsworth
(Consultant
Physician)
Dr. Helen
Gregory
Dr Antonia
Torgersen
(Edinburgh)
Susan Stewart
(Genetic
Specialist
Nurse)
Tayside
(Perth, Angus,
Dundee and
NE Fife)
Ninewells
Hospital
Ninewells,
Hospital
Dr Gillian
Stewart and
neurology
team
Dr O’
Riordan
Dr
Gentleman
Dr Robin
Smith; Home
Ventilation
Dr A
Bateman
(Edinburgh)
Dr A. M. Choy
Dr Adelle
Dawson
No specialist
service
(Referral to
local adult
PT)
Kirsten
Patterson
(Genetic
Specialist
Nurse)
Dr Catherine
McWilliam
Dr Cheryl
Longman
Dr Catherine
McWilliam
Dr Antonia
Torgersen
(Edinburgh)
Betty Forrest
(Home
ventilation)
Perth CPDT
Carol Greig (PT)
Kirsten
Patterson
(Genetic
Specialist
Nurse)
Western Isles Western Isles
Hospital
Southern
General
Hospital,
Glasgow
Dr Maria
Farrugia
Dr Richard
Petty
Dr Scott
Davidson
(Glasgow)
Marina Di
Marco Wilma
Stewart
(NCA)
Dr Alison
Ross
Dr Patrick
Fox
(Raigmore)
Dr W
Stewart
(Glasgow)
Alison Clarke
(Respiratory
Support Nurse)
35