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Zero chance of ever getting an ADHD assessment

Posted By septemberqe77

"Zero chance of ever getting an ADHD assessment"

About: Edinburgh Health & Social Care Partnership General practices in Lothian

(as a service user),

I need to see a specialist to get diagnosed. I have been waiting for 4 years.

There is never any progress. Ballenden house tells me now that they haven't done any assessments in 18 months. Looking at freedom of information requests from before then they were doing something like 30 or 40 a year. The waiting list is over a thousand people long. The only contact I have ever got from the NHS is them sending letters that if I don't respond to fast enough I get removed from the waiting list. It feels incredibly cruel.

My GP told me to get a private assessment if I could afford it and if it was high quality they would accept it and take over prescribing. I spent a lot of money that I can't afford to get the highest quality assessment I could. Now they tell me that almost immediately after I talked to them all the Edinburgh GPs got together and decided that they would never accept a private diagnosis and will need me to see the NHS specialists before they do anything. They won't listen to me and refuse to do anything or listen to my complaint any further. The NHS has not done any assessments for 18 months. Before that they were doing something like 30 or 40 assessments a year. The waiting list is over a thousand people long. I will legitimately be waiting an entire life time to see someone. Now I am stuck paying for something that helps me but I can barely afford as a student on a tiny stipend.

The GP has no sympathy. Ballenden house aren't doing anything at all to support me. I feel like crying every day. I already struggle with my mental health and this makes it worse. I don't know what to do. I need someone to help me but all these groups that I assumed are supposed to sort of help my mental health just cause even more suffering. It is cruel. It feels unfair. I tried to do the right thing. I have been waiting for an NHS assessment for 4 years. I want to scream.

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Responses

Response from Mariska Vernon-Stroud, Patient Experience Team Lead, Patient Experience Team, NHS Lothian 2 months ago
Mariska Vernon-Stroud
Patient Experience Team Lead, Patient Experience Team,
NHS Lothian

I gather feedback from patients to recognise good practise and supporting improving services in NHS Lothian.

Submitted on 20/02/2025 at 16:02
Published on Care Opinion at 16:02

Dear septemberqe77,

Thank you for taking the time to share your story, and your previous stories over the past two years. I can see from your story the ongoing frustration and impact this is having your overall wellbeing.

On receiving your story, I have linked in with the Operational Leads who oversee the ADHD service. They provided the following information in relation to your experience.

‘Thank you for sharing your story and I am sorry for the length of time you continue to wait for an appointment. The long wait for ADHD assessments is a situation we are very aware of in NHS Lothian and Edinburgh Health and Social Care Partnership.

GPs are now advising patients at point of referral that waiting times for assessment are very lengthy in order to try to manage expectation, and a review of how we meet the ongoing demand is currently under way. This review is being undertaken by managers and clinicians from all of the partnership areas (Edinburgh, East, West and Mid Lothian) and work is ongoing. The waiting list is going through a validation process currently and you will be asked to respond to advise if you wish to remain on the waiting list. If you don’t respond within the timescales and to the reminders you will be removed from the waiting list in line with waiting times governance.

All referrals to NHS Lothian are processed in accordance with waiting times governance. Where a referral is made to our service by a GP for treatment following private UK assessment and diagnosis, the following criteria apply:

-The patient must meet the criteria for usual referral threshold. -The referring GP must include within the referral any copies of paperwork including initial assessment and any recent prescribing.

The GP can request advice from the triage team as to whether current prescribing meets local criteria while the patient waits for the NHS assessment.

-Following triage, the patient is then placed on the standard NDD waiting list for assessment as a ‘new patient’ and is contacted once they reach the top of the waiting list.

On receipt of these referrals, it is assumed that the GP has already considered the idea of treatment as part of a Shared Care Agreement and deemed that this is not possible.

NHS Lothian has shared care agreements for some of the drugs used to treat ADHD in children, young people over 6, and adults. These agreements are between NHS Lothian specialist services and GP practices in Lothian. These agreements are designed to support GPs and specialist teams in providing safe and accessible care for patients. The agreements detail what part of the care should be provided by specialist/hospital consultant teams and which parts are the responsibility of the GP and their team and are agreed by representatives of the specialist service, GPs, and pharmacists.

There are no similar agreements between GP practices and private providers. As independent contractors GP practices can choose to share care with private providers but there is no requirement to do so.

If a practice chooses to share care with a private provider, they will normally require the private provider to provide the same level of specialist input as NHS specialist services; in other words, to follow the NHS Lothian shared care agreement. This is sensible as the shared care agreement is there to support safe and effective care.’

I hope this information is useful and provides some insight into how NHS Lothian and Edinburgh Health and Social Care Partnership are seeking to address access to ADHD assessment and the waiting times people are experiencing.

Kind regards,

Mariska

  • {{helpful}} {{helpful == 1 ? "person thinks" : "people think"}} this response is helpful

Update posted by septemberqe77 (a service user)

Are the operational leads aware that the Lothian Local Medical Committee and GP practices in Lothian have decided to never take part in shared care agreements? That's my understanding based on the response about this where they deem it not possible. GP practices can choose to share care with private providers but there is no requirement to do so. If a practice chooses to share care with a private provider, they will normally require the private provider to provide the same level of specialist input as NHS specialist services; in other words, to follow the NHS Lothian shared care agreement. This is sensible as the shared care agreement is there to support safe and effective care.

But the GP indicates that they are no longer be able to take on prescribing and monitoring of shared-care medications or specialist monitoring of certain medical conditions for any patients with a diagnosis made in the private sector. They state that these shared-care medications and/or conditions require specialist monitoring and review, and many such medications are either only licensed for specialist prescribing or prescribed outside their licensed use.

This is a decision as far as I understand that has been agreed across GP practices in Lothian and supported by the Lothian Local Medical Committee due to capacity and workload issues, the longstanding underfunding in primary care, and the impact of long NHS waiting lists. They say that they are more than happy to discuss onward NHS referrals in a routine appointment for a second opinion or transfer of care, but cannot prescribe in the interim period. So my question is whether my GP is lying to me about this?

Response from Mariska Vernon-Stroud, Patient Experience Team Lead, Patient Experience Team, NHS Lothian 2 months ago
Mariska Vernon-Stroud
Patient Experience Team Lead, Patient Experience Team,
NHS Lothian

I gather feedback from patients to recognise good practise and supporting improving services in NHS Lothian.

Submitted on 26/02/2025 at 14:29
Published on Care Opinion at 14:29

Dear septemberge77,

Thank you for your further response. I acknowledge the challenges you are experiencing in trying to get clarity about how to gain access to an assessment and treatment for ADHD. Again, I echo again how sorry I am for the impact it is having on you. I have shared your further response with the Operational leads for the service.

Can I suggest it may be worth discussing this issue with your GP practice Manager who can give insight into access and your individual situation. Additionally, you can raise your concerns through the complaints system within your GP practice or through Patient Experience Team. The Patient Experience Team can be contacted by telephone on 0131 536 3370 (Mon-Fri, 9am-2pm) or by email on LOTH.feedback@nhs.scot

Kind regards,

Mariska

  • {{helpful}} {{helpful == 1 ? "person thinks" : "people think"}} this response is helpful
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