Lothian NHS Board = Waverley Gate 2-4 Waterloo Place Edinburgh EH1 3EG = Telephone: 0131 536 9000 www.nhslothian.scot.nhs.uk Date: 05/01/2016 Our Ref: 552 Enquiries to : Bryony Pillath Extension: 35676 Direct Line: 0131 465 5676 bryony.pillath@nhslothian.scot.nhs.uk Dear FREEDOM OF INFORMATION NEUROLOGY SERVICES I write in response to your request for information in relation to neurology services in NHS Lothian. 1. As at 1 November or the latest known date, how many residents in your health board area have one of the following neurological conditions, as specified? If possible, please break this information down by age. If due to the Data Protection Act completing the table would prejudice the data protection rights of any individual, please ignore the breakdown by age and include only the total for each neurological condition. The table below details the number of patients diagnosed with each of these conditions as of 1 November. We are unable to split this data into age group, as the data is not held in this way. Information may be held in individual patient records, but in order to provide the information you request it would be necessary to review each patient record over the period you have specified, requiring significant resources. Under section 12 of the Freedom of Information (Scotland) Act 2002, NHS Lothian is not required to respond to your request if the resources required to do so equate to more than 600 in cost. Neurological Conditions, NHS Lothian Condition Number of patients diagnosed Parkinson s Disease 2,000 Multiple Sclerosis (MS) 2,500 Motor Neurone Disease (MND) 65 Huntingdon s Disease 105 Brain Injury 1,935 Total 6,605
2a. Do you directly provide neurological health care services in your health board area or are your health board residents with neurological conditions provided with neurological health care services by a different territorial health board? NHS Lothian directly provides neurological services to patients. A small number of patients with particularly complex needs may have care provided by out of area services. This would be on a case by case basis using established systems in place for agreeing and reviewing out of area placements. NHS Lothian does not currently have any patients being treated out of area for neurological conditions. 2b. What specialist health and social care services are provided/commissioned by the health board for residents with the neurological conditions specified in this FOIA request in the health board area? How many people were accessing these on 1 November? If it is not possible to state figures for this date, please use the latest date known and state what this is. Please note this question is being sent to local authorities and health boards, to ensure the capture of all services provided/commissioned by the NHS and local authorities. The services provided are detailed in the table below. It is not possible to detail the numbers of patients using each service. This is because NHS Lothian s patient management system TRAK does not link diagnosis to treatment. Information may be held in individual patient records, but in order to provide the information you request it would be necessary to review each patient record over the period you have specified, requiring significant resources. Under section 12 of the Freedom of Information (Scotland) Act 2002, NHS Lothian is not required to respond to your request if the resources required to do so equate to more than 600 in cost. NHS Lothian Neurological Services Service Specialist residential neurological centre in health board area Specialist residential neurological centre outside health board area Available Page 2 of 10
NHS Lothian Neurological Services Service Specialist residential respite care Specialist day respite care Specialist maintenance or short term rehabilitation for people with neurological conditions Specialist slow stream rehabilitation for people with neurological conditions Specialist self management for people with neurological conditions Specialist home care for people with neurological conditions Assistive technology daily living Assistive technology communication Specialist physiotherapy Specialist occupational therapy Neuropsychological support Neuropsychiatric support Neurologist Specialist nurse (neuroscience or neurology specialist nurse or specialist nurse for specific neurological condition) Other Huntingdon s Specialist Service Available 3. Please indicate your performance against the Clinical Standards for Neurological Health Services 2009, and state when performance against each standard was last measured. NHS Lothian Clinical Standards for Neurological Health Standard Met Partially met 1. General Met neurological health services provision 2. Access to Criteria 2.i. The NHS Board demonstrates a neurological 90% OP demand is met by substantive health services resources - Not met - Analysis of capacity and demand for outpatient services will be included in implementation of the Neurological Care Improvement Plan- Not met Date measured Page 3 of 10
NHS Lothian Clinical Standards for Neurological Health Standard Met Partially met Criteria 2.ii. Outpatients are referred and triaged electronically. They are allocated to the appropriate waiting list within 5 working days of receipt of the referral at the centre in at least 95% of cases Partially met Not met Date measured 3. Patient encounters in neurological health services 4. Management processes in neurological health services Criteria 2.vii. District general hospitals and regional neurology centres have on-site 24 hour access to telemedicine facilities Partially met Criteria 3. This criteria has 53% of mets, 29% of partial mets and 18% not mets. The 18% of not mets will be considered during implementation of the Neurological Care Improvement Plan: Criteria 3.iii. The NHS board provides access to, and demonstrates participation in, communication training for all staff having direct contact with patients with neurological conditions. Criteria 3.ix.b. Immediate discharge information is sent to the GP electronically in at least 95% of cases. Criteria 3.ix.c. Final discharge summaries are dispatched electronically to the GP within 5 working days of discharge in at least 95% of cases. Criteria 4.i. At every consultation, all patients are offered a copy of the GP letter or a management plan. Any changes to medication are provided in writing immediately to the patient. This is not me - This standard will be considered during implementation of the Neurological Care Improvement Plan Criteria 4.iv.a. The neurological service has access to an integrated neuropsychology and neuropsychiatry service providing a diagnostic and treatment service for patients with Page 4 of 10
NHS Lothian Clinical Standards for Neurological Health Standard Met Partially met neurological symptoms unexplained by disease, and patients with defined neurological disease that have co-morbid psychiatric disorders. This is partially met. Criteria 4.iv.b. At least 80% of patients referred to this service requiring urgent assessment will have initial contact within 24 hours if referred from inpatient consultation, or within 20 working days if referred from outpatient consultation. This is not met - Current waiting times for clinical neuropsychology services for patients referred as urgent inpatient case are an average of 9 days, with waiting times ranging from 0 to 19 days. Referral from an outpatient clinic averages 33 days but ranges from 1 to 84 days. Criteria 4.xii.a. Palliative care is provided for patients with neurological conditions, their family and carers, as required throughout the course of their illness, and in accordance with the wishes of the patient. This is partially met. Criteria 4.xii.c. Patients with neurological conditions are encouraged to discuss advance care planning, when clinically appropriate. This is partially met. Not met Date measured 11. Access to specialist motor neurone disease services Criteria 11.iii. The NHS board provides rapid access to demonstrate effective care pathways covering all aspects of the illness, including links to specialist palliative care and respiratory medicine, gastrostomy services and social services. This is partially met. 12. Diagnosis of motor neurone disease 13. Ongoing management of Met Criteria 13.i.b. A needs assessment is offered to those caring for people with motor neurone 2014 Page 5 of 10
NHS Lothian Clinical Standards for Neurological Health Standard Met Partially met motor neurone disease at all stages of the patient s condition. disease The assessment is updated as the disease progresses. This is partially met. Not met Date measured 14. Access to specialist multiple sclerosis services Criteria 14.ii.b. An MS specific structured patient and family education programme is offered to all patients with MS and can be accessed throughout the course of the condition. This is partially met - In Lothian there are educational programmes available, one for newly diagnosed individuals and their family, and another is a sixsession programme for people with MS only. Criteria 14.iii. A structured education programme specific to MS is offered to all healthcare professionals who have regular contact with patients with MS. This is not met - There is no formal education programme for healthcare professionals working with MS however we regularly have AHPs sitting in on our clinics for education in the management of multiple sclerosis. Talks are provided on MS to GP practices as requested. During the Bold in Blue week education updates were offered to patients with MS but also to healthcare professionals working within the hospital and community. 15. Diagnosis of multiple sclerosis 16. Ongoing management of multiple sclerosis 17. Access to Parkinson s disease services 18. Diagnosis of Parkinson s Met Met Met Met 2014 2014 2014 2014 Page 6 of 10
NHS Lothian Clinical Standards for Neurological Health Standard Met Partially met disease 19. Ongoing Criteria 19.i.b. PD inpatients are given the management of opportunity to administer their own medication. Parkinson s This is not met. disease Parkinson s Disease has been designated a priority workstream in the Neurological Care Improvement Plan and this standard will be considered as part of that programme of work Not met Date measured 4a. Does your health board have a 3-year neurological service plan as required by Standard 1.2 of the Clinical Standards for Neurological Health Services 2009? Please indicate the web address or alternative route for accessing the plan, the timespan the plan applies to and indicate the timescale for review. Please also indicate who has overall responsibility for leading implementation of this plan and for its review, with job titles., NHS Lothian has a 3 year neurological care improvement plan for the period 2014-2017, which can be accessed on NHS Lothian s website at the following link: http://www.nhslothian.scot.nhs.uk/ourorganisation/strategies/documents/nhs%20lothian %20Neurological%20Care%20Improvement%20Plan%202014-2017%20-%20Final.pdf The plan is for 2014-2017, but we anticipate that a full implementation will take longer than the three years. This is due to the wide scale nature of the plan which goes beyond meeting the requirements of the clinical standards for neurological health services. There will be ongoing monitoring of progress through the Neurological Improvement Leadership Group, which was established to oversee the implementation of the plan and includes a multidisciplinary membership drawn from NHS Lothian, local authorities and the voluntary sector. This group reports to the Integration Joint Boards in each local authority area, and the NHS Lothian Board through its Strategic Planning Committee. Overall responsibility for implementation and review of the improvement plan lies with Mr Jim Crombie, Chief Officer for Acute Services, NHS Lothian. Page 7 of 10
4b. In order to provide a comparison, please indicate whether your health board has a service delivery plan or similar for heart disease? Please indicate the web address or alternative route for accessing the plan, the timespan the plan applies to and indicate the timescale for review. NHS Lothian has a local plan to meet the recommendations in the Scottish Government National Heard Disease Improvement Plan (HDIP) 2004 which is available online at the following web address: http://www.gov.scot/resource/0045/00458289.pdf The HDIP is a five year plan with the expectation that Heart Disease Managed Clinical Networks deliver against all six priorities and corresponding 16 actions within the timeframe of 2014-2019. Reporting is it the Scottish Government through the National Advisory Committee for Coronary Heart Disease; a self assessment must be submitted annually from March 2016. 5a. If someone who resides in your health board area has a neurological condition as specified in this FOIA request, is their care across health and social care services coordinated by one professional or service? Neurological Service provision Service / professional Neuroscience or neurological specialist nurse Neurological condition-specific specialist nurse Neurologist District Nurse GP A neuro navigator or navigation service Care Across Health and Social Care Services - Nurse led specialist services for Parkinson s Disease, Multiple Sclerosis, Motor Neuron Disease and Huntingdon s Disease coordinate care and access to services across patient pathway. No -Patient seen as required for specialist care then discharged back to GP with plan. No - Assessment made as patient requires. - GP service is the patient navigator who will help patient access appropriate service or specialist or signpost them to information they require depending on their assessment following consultation. N/A Page 8 of 10
Neurological Service provision Service / professional Social worker/care manager Other NHS 24 Care Across Health and Social Care Services - Assessed as per patient s needs required by GP or specialist. - NHS 24 can also help navigate the system and help patients access the service they require. The patient s charter outlines patient s service responsibilities. 5b. For the purposes of comparison with another condition please can you indicate whether if someone who resides in your health board area has heart disease, is their care across health and social care services co-ordinated by one professional or service? Heard Disease Service provision Service / professional Heart disease/failure specialist nurse Consultant District Nurse GP A heart disease navigator/navigation service Social worker/care manager Other NHS 24 Care Across Health and Social Care Services No - Not until required by assessment of patient needs. Following care stabilisation patient would be discharged back to GP care with plan. No Patient seen as required for specialist care then discharged back to GP with plan. No - Assessment made as patient requires. - GP service is the patient navigator who will help patient access appropriate service or specialist or signpost them to information they require depending on their assessment following consultation. N/A - Assessed as per patient s needs required by GP or specialist. - NHS 24 can also help navigate the system and help patients access the service they require. The patient s charter outlines patient s service responsibilities. I hope the information provided helps with your request. Page 9 of 10
If you are unhappy with our response to your request, you do have the right to request us to review it. Your request should be made within 40 working days of receipt of this letter, and we will reply within 20 working days of receipt. If our decision is unchanged following a review and you remain dissatisfied with this, you then have the right to make a formal complaint to the Scottish Information Commissioner. If you require a review of our decision to be carried out, please write to the FOI Reviewer at the address at the head of this letter. The review will be undertaken by a Reviewer who was not involved in the original decision-making process. FOI responses (subject to redaction of personal information) may appear on NHS Lothian s Freedom of Information website at: http://www.nhslothian.scot.nhs.uk/yourrights/foi/pages/default.aspx Yours sincerely ALAN BOYTER Director of Human Resources and Organisational Development Cc: Chief Executive Page 10 of 10