I write in response to your request for information in relation to Cleft Services in NHS Lothian.

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1 Lothian NHS Board = Waverley Gate 2-4 Waterloo Place Edinburgh EH1 3EG = Telephone: Date: 02/02/2016 Our Ref: 494 Enquiries to : Bryony Pillath Extension: Direct Line: bryony.pillath@nhslothian.scot.nhs.uk Dear FREEDOM OF INFORMATION CLEFT SERVICES I write in response to your request for information in relation to Cleft Services in NHS Lothian. 1. How many new adult (over 16 years of age) cleft patients have you received each financial year for the past three years? 2. How many minor (under 16 years of age) cleft patients have you received each financial year for the past three years? The table below details the numbers of patients treated as inpatients in NHS Lothian for cleft lip, cleft palate, or cleft lip and cleft palate. Inpatients treated by Cleft Services, NHS Lothian Year Adult inpatients >16 years Child inpatients <16 years 2012/ / / How many surgical repairs have been carried out per financial year for the past three years? 4. How many primary surgeries take place per financial year for the past three years?

2 494 Cleft Services December How many re-repair surgeries have taken place each financial year for the past three years? Cleft lip and palate surgery, by procedure, NHS Lothian Revision of Year Primary closure of cleft lip Primary repair of cleft palate primary closure of cleft lip Revision of repair of cleft palate 2012/ / / What percentage of patients are transferred to high dependency ward following surgery? I am advised that this information is not collected centrally. 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. 7. What is the cost of care on a high dependency ward? The average cost of care for one patient on a high dependency ward in NHS Lothian is 861 per day. 8. What is the cost of care on a post surgery admissions ward? Page 2 of 9

3 494 Cleft Services December 2015 The average cost of care for one patient on a post surgery admissions ward in NHS Lothian is 646 per day. 9. What is the cost of care for a patient to attend surgery on the above wards if they reside if a different jurisdiction (such as Greater Glasgow and Clyde NHS)? The cost of care of a patients is the same no matter where their Board of residence is. 10. What costs are charged back to the NHS board where the patient resides? Cleft surgery is a national service funded by the National Services Division, so NHS Lothian does not charge Boards of residence for treating non NHS Lothian patients. 11. What is the post surgery infection rate for each financial year for the past three years? I am advised that this information is not collected centrally. 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. Questions: 12. How many cleft babies have been identified as requiring grommets by two years of age? Page 3 of 9

4 494 Cleft Services December Of the above children, how many have had the grommets inserted as part of the primary operation? 14. Of the above, how many have had an operation solely for insertion of grommets? There are a number of diagnoses which may require insertion of grommets, in addition to cleft lip and palate and this information cannot be separated to only show patients with grommets inserted for cleft lip and palate only. 17 children with cleft lip, cleft palate or cleft lip and palate have had the procedure Myringotomy with insertion of ventilation tube through tympanic membrane over the period April 2012 to March of these children were aged under two years of age at the time of the operation, and 11 children were between the ages of 2 and 16 years. Only one of these cases had the procedure listed as a primary operation, however this does not mean that the remaining procedures were carried out as part of any cleft-related surgery since Adenoidectomies are commonly carried out in conjunction with the insertion of grommets, and these would appear as the primary procedure. Questions: 15. Do surgical consultants and anaesthetists meet the parents / patients prior to surgery on all occasions? 16. If so, when does this meeting take place? Yes, the surgeon always meets patients and family in the multidisciplinary cleft clinic soon after birth of the baby, at the place of birth, and on the ward prior to the operation. In addition, the surgeon may also see the patient either in the maternity unit or at a surgical multidisciplinary clinic for patients who need an additional surgical or nursing review. Page 4 of 9

5 494 Cleft Services December 2015 The anaesthetist always sees the patient preoperatively on the day prior to or the day of surgery. If the patient attends a preadmission clinic the anaesthetist often also sees them then. Complex cases are discussed by the multidisciplinary team which includes respiratory paediatricians, sleep medicine, ENT specialists and anaesthetists. Treatments plans are discussed with the family either in clinic or by telephone. Questions: 17. Do pre admission assessments take place? 18. If so, how long do the appointments take on average and who carries out the assessments? Yes, pre-admission assessments take place two week before the admission date. These are carried out by the Cleft Nurse Specialists over the telephone, each call taking 30 to 45 minutes. Questions: 19. Do regular multi-disciplinary meetings take place with parents? 20. If so, do consultants attend from each practice? 21. Will this continue should a single surgical service be provided in Glasgow? Yes, all patients are seen for multi-disciplinary team clinic appointments; the number of appointments required varies between patients. A designated consultant for each discipline attends the multi-disciplinary team clinic appointments these are Orthodontics, Speech and Language Therapy, Dentistry and Ear Nose and Throat (ENT). There is currently no plan to change this process if there is a move to a single system surgical service in Glasgow. Page 5 of 9

6 494 Cleft Services December How many patients appointments have been 'missed' for each financial year for the past three years? Did not attend appointments for cleft services, NHS Lothian Year Number of did not attend appointments 2012/ / / How many patients have 'slipped through the net' for each financial year for the past three years? Information about patients who have not been diagnosed with cleft lip and palate or have not accessed services is not held. Under section 17 of the Freedom of Information (Scotland) Act 2002 I must advise you that NHS Lothian does not hold the information you request. 24. Please provide a copy of all reports, to include reviews, audits and recommendations of the service submitted and relied upon by NSD for the past nine years. 25. Please provide a copy of all reports, to include reviews, audits and recommendations of the service submitted and relied upon by NSS for the past nine years. Annual reports and service are published and are available on the NHS Scotland National Services Division (NSD) website at the following links: Annual reports - Page 6 of 9

7 494 Cleft Services December 2015 Service reviews - Information can also be found on the Managed Clinical Network for Cleft Service website Cleft Care Scotland at the following address: Please provide a copy of all documents detailing the 'issues' which have given rise to the review of the surgical services in Scotland. 27. Please provide a copy of all documents detailing the 'significant challenges' which have given rise to this review. I have enclosed the notes of a meeting between the NHS Scotland National Services Division (NSD), NHS Lothian and NHS Greater Glasgow and Clyde on 29 May 2015 in which difficulties faced by Cleft Surgical Services were discussed. I have also enclosed an update on the Scottish Single Cleft Surgery Service considered by the NHS National Services Scotland (NSS) National Specialist Services Committee on 1 June Please provide a copy of all documents detailing the challenges which gave rise to the review in 2011/ Please provide a copy of all documents detailing the recommendations following the 2011/2012 review. I am advised that the review in 2011/12 was undertaken by the NHS Scotland National Services Division (NSD) and that information associated with the review are held by them and not by NHS Lothian. You can request this information directly from the National Services Division using the following contact details: National Services Division Page 7 of 9

8 494 Cleft Services December 2015 Area 062 Gyle Square 1 South Gyle Crescent Edinburgh, EH12 9EB Main office: NSS.nsd-enquiries@nhs.net 30. Please provide a copy of the standards which the Cleft surgical team are required to adhere to. I have enclosed a copy of the NHS National Services Scotland (NSS) service specification for Cleft Lip and Palate Surgical Services, updated October Questions: 31. Please provide a copy of the full and un-redacted minutes of the Options Appraisal meeting on 28 October Please provide a list detailing the names of all attendees of the Options Appraisal meeting on 28 October 2015 and who they were representing and/or field of expertise. I am advised that the information concerning the Options Appraisal meeting is held by NHS Scotland National Services Division (NSD) and not by NHS Lothian. You can request this information directly from the National Services Division using the following contact details: National Services Division Area 062 Gyle Square 1 South Gyle Crescent Edinburgh, EH12 9EB Page 8 of 9

9 494 Cleft Services December 2015 Main office: Please provide a copy of the minutes of all NHS Lothian meetings where the cleft surgical services have been discussed for the period 01 January 2014 to 31 October There no minuted meetings during this period where cleft services were discussed; therefore NHS Lothian does not hold this information. I hope the information provided helps with your request. 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: Yours sincerely ALAN BOYTER Director of Human Resources and Organisational Development Cc: Chief Executive Page 9 of 9

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