Freedom of Information Request – Ref: GHC-13062025-254183
Thank you for your recent Freedom of Information request. Please find our response below.
You asked:
1. I would be grateful if you could send the Trust’s most recent planning document(s) for the diagnosis and treatment of Alzheimer’s Disease including implementation of lumbar punctures (CSF) and Blood-based Biomarker testing. Please include planning documents that cover the entire Trust and specific department plans, such as neurology, psychiatry, care of the elderly, pathology or memory clinic teams.
Our response:
Please see below the SOP for our CSF Biomarker pilot. The pilot has been planned and organised by old age psychiatrists in the Trust, a consultant neurologist and the pathology team, as well as the deputy general manager for care of the elderly in neurology and stroke. The SOP was reviewed by managers in the Trust including the Clinical Commissioning Manager – Dementia, the Clinical Lead for Dementia, the Deputy Director of Nursing and the GP/Deputy CMO. We have also collaborated with the Medical Manager in Neurology at Roche Diagnostics to organise the biomarker testing kits for our pilot.
We are hoping this pilot will launch this month. It is only for a small sample of private patients currently. We plan to use the data collected from this to make a business case with the aim to request funding for this to be expanded to NHS patients. As we do not have funding secured for NHS patients, we do not have anything more details in the way of planning documents to cover the entire Trust or specific department plans.
We will have to await the analysis of the data and evidence if this increases efficacy of diagnosis before we are able to investigate funding opportunities and additional resourcing.
Please see the SOP on the link below:
You asked:
2. How many patients were diagnosed with Alzheimer’s Disease (ICD-10 codes = G30, G30.1, G30.8, G30.9, F00, F00.1, F00.2 or F00.9) in your Trust in the last 12-month period for which data are available?
3. How many patients were diagnosed with Mild Cognitive Impairment and / or Mild Dementia due to Alzheimer’s Disease (ICD-10 codes = G31.84, G30.1, or MMSE scores = 21 to 24) in your Trust in the last 12-month period for which data are available?
Please see our response to questions 2 and 3 on the link below:
You asked:
4. Where, if at all, does the Trust carry out lumbar punctures (cerebrospinal fluid) for diagnosing patients with Alzheimer’s Disease?
Our response:
The Trust does not carry out lumbar punctures to diagnose Alzheimer’s Disease.
You asked:
5. Please provide a list of the full names of other Trusts or other organisations to which the Trust refers patients for lumbar punctures in the diagnosis of Alzheimer’s Disease.
6. What is the average waiting time for a patient to get an appointment for a lumbar puncture to test for a diagnosis of Alzheimer’s Disease?
7. How many lumbar punctures to test for Alzheimer’s Disease took place in the last 3-month period for which data are available?
8. How many Blood-based Biomarker (BBBM) tests from Cerebrospinal fluid (CSF) to test for Alzheimer’s Disease were conducted in the last 3-month period for which data are available?
9. Where, if at all, does the Trust carry out Blood-based Biomarker (BBBM) tests from Cerebrospinal fluid (CSF) for diagnosing patients with Alzheimer’s Disease?
10. Please provide a list of the full names of other Trusts or other organisations, to which the Trust refers Blood-based Biomarker tests from cerebrospinal fluid (CSF) for pathology in the diagnosis of Alzheimer’s Disease.
11. What is the average waiting time for pathology results to come back from Blood-based Biomarker tests?
Our response to questions 5 to 11:
Not applicable.
You asked:
12. To what extent are there plans for service improvement of diagnosing Alzheimer’s Disease .
Implementation of plans has started, a plan exists and implementation has not started, a plan is being developed, there is no plan, other – please state.
Our response:
| Yes / No | |
| Implementation of plans has started | No |
| A plan exists and implementation has not started | Yes |
| A plan is being developed | Yes |
| There is no plan | No applicable |
| Other – please state | Awaiting audit to be signed off so implementation of learning can commence |
You asked:
13. Are the plans for service improvement of diagnosing Alzheimer’s Disease related to: Cognitive assessment services, Biomarker services, None / neither.
Our response:
Neither.
You asked:
14. Which of the following services does the Trust have in place in preparation for increased service delivery for Alzheimer’s Disease?
Our response:
| Related to administration of lumbar punctures | Related to Blood-based Biomarker testing | |
| Yes / No | Yes / No | |
| Budget | No | No |
| People | No | No |
| Training | No | No |
| Clinic space / capacity | No | No |
| Governance arrangements | Not as yet, though discussions are in the very early stages. Once these discussions are agreed, we will look at budgetary implication’s, clinic/capacity and training | Not as yet, though discussions are in the very early stages |
Narrative regarding diagnosis of Alzheimer’s disease, MCI and Early onset:
Our service advised they have only included patients where a diagnosis has been recorded as confirmed. There may be other patients where the condition is apparent or suspected but has not been recorded as confirmed.
Please note this would be particularly the case where the diagnosis is recorded by a nurse. Only medics in the Trust can confirm a diagnosis.
Narrative from recent audit:
It has been highlighted we are under reporting dementia via clinical coding on the system (RiO), and this may be affecting our total dementia diagnosis rate in MAS. Despite this, it is important to note that our letters to GP’s showed the diagnosis clearly in 100% of cases, so we are communicating the diagnosis to GP’s correctly and clearly in all cases, consistently.
Another incidental finding of the audit was that Mild Cognitive Impairment (MCI) was not consistently coded on RiO. A proportion of patients diagnosed with MCI will go on to develop a dementia and identifying these patients early and providing monitoring of symptoms and a plan of care around minimising risk factors, is an important part of the MAS role. The results suggest that MAS are under-reporting MCI diagnoses on RiO clinical coding.
Next steps:
Should you have any queries in relation to our response, please do not hesitate to contact us. If you are unhappy with the response you have received in relation to your request and wish to ask us to review our response, you should write to:
Louise Moss
Head of Legal Services / Associate Director of Corporate Governance
c/o Gloucestershire Health and Care NHS Foundation Trust
Edward Jenner Court
1010 Pioneer Avenue
Gloucester Business Park
Brockworth, GL3 4AW
E-mail: louise.moss@ghc.nhs.uk
If you are not content with the outcome of any review, you may apply directly to the Information Commissioner’s Office (ICO) for further advice/guidance. Generally, the ICO will not consider your case unless you have exhausted your enquiries with the Trust which should include considering the use of the Trust’s formal complaints procedure. The ICO can be contacted at: The Information Commissioner’s Office, Wycliffe House, Water Lane, Wilmslow, Cheshire SK9 5AF.