FOI 1692 – Epidermolysis Bullosa
FOI Reference Number:
1692
Request
1. The number of people in your ICB/ICP area who have been diagnosed with Epidermolysis Bullosa during the past five years.
2. The number of people with Epidermolysis Bullosa referred to one of the UK’s specialist EB treatment centres in the past five years.
Note: Specialist centres include children’s services at Birmingham Women’s and Children’s Hospital, Glasgow Royal Hospital for Children and GOSH and adult services at Glasgow Royal Infirmary, Guy’s and Thomas’ Hospital and Solihull Hospital.
3. How many GPs and frontline healthcare professionals have received training on Epidermolysis Bullosa diagnosis and care within your area. Please refer to training undertaken where possible
Response
Date: 15 November 2022
FREEDOM OF INFORMATION – DECISION NOTICE
Dear Sir / Madam,
FOI Reference Number: 1692
1. The number of people in your ICB/ICP area who have been diagnosed with Epidermolysis Bullosa during the past five years.
2. The number of people with Epidermolysis Bullosa referred to one of the UK’s specialist EB treatment centres in the past five years.
Note: Specialist centres include children’s services at Birmingham Women’s and Children’s Hospital, Glasgow Royal Hospital for Children and GOSH and adult services at Glasgow Royal Infirmary, Guy’s and Thomas’ Hospital and Solihull Hospital.
3. How many GPs and frontline healthcare professionals have received training on Epidermolysis Bullosa diagnosis and care within your area. Please refer to training undertaken where possible
Our response:
Q1. and Q2. The table below contains the number of inpatient spells where the patient has a diagnosis of Epidermolysis bullosa, unspecified or Epidermolysis bullosa dystrophica. All this activity is at local or non-specialised providers. This is all the information that we are able to identify with regards to diagnoses of Epidermolysis Bullosa.
Please note that, in order to prevent identification of individuals where the numbers involved are 5 or fewer, we have withheld this information under the exemption permitted to us by Section 40 of the FOI Act: Personal information.
Please note also that the information for 2022/23 only contains activity up to financial month 5.
FY Patients
2018/19 <5
2019/20 0
2020/21 <5
2021/22 9
2022/23 <5
Q3. We do not hold this information.
I hope that this answers your queries with the information we currently hold, but if I can be of any further assistance please do not hesitate to contact me.
If you are dissatisfied with the handling of your request, you have the right to ask for an internal review. Internal review requests should be submitted within two months of the date of receipt of the response to your original letter and should be addressed to:
NHS Derby and Derbyshire ICB
FOI Team
Scarsdale
Nightingale Close
Newbold
Chesterfield
S41 7PF
Or:
If you are not content with the outcome of our review, you may apply directly to the Information Commissioner for a decision. Generally, the ICO cannot make a decision unless you have exhausted the complaints procedure provided by the Derby and Derbyshire Integrated Care Board (ICB).
The Information Commissioner can be contacted at: Information Commissioners Office, Wycliffe House, Water Lane, Wilmslow, Cheshire SK9 5AF, telephone 0303 123 1113, email casework@ico.org.uk.
Yours faithfully,
Kathryn Jacklin
FOI Officer
Derby and Derbyshire ICB
All information we have provided is subject to the provisions of the Re-use of Public Sector Information Regulations 2015. Accordingly, if the information has been made available for re-use under the Open Government Licence (OGL) a request to re-use is not required, but the licence conditions must be met. You must not re-use any previously unreleased information without having the consent from the ICB. Should you wish to re-use previously unreleased information then you must make your request in writing (email will suffice) to the FOI Lead via ddicb.foi@nhs.net. All requests for re-use will be responded to within 20 working days of receipt.
