By way of background, on 6 December 2019, one year and ten months ago, the Bristol Adult ADHD Support Group filed a formal NHS complaint with Bristol North Somerset South Gloucestershire Clinical Commissioning Group (BNSSG CCG) regarding the very long waiting list. As a result of that complaint, a joint working group was formed with BNSSG CCG, AWP, and the Bristol Adult ADHD Support Group to address the waiting list matter and to develop a sustainable and effective adult ADHD service model. We all worked hard until January 2020 when the project was paused due to heavy Covid-19 work loads. Ten months have now gone by and service user involvement in the project remains paused. The Bristol Adult ADHD Support Group has been trying to get a date from BNSSG CCG for when the work can recommence. Here is a timeline of interactions with the CCG (to read it in date order, scroll down to the entry for Tuesday, 2 February 2021 and read upwards):
Tuesday, 26 October 2021
BNSSG CCG failed to send a written commitment by the deadline date of Monday 25 October, so the Bristol Adult ADHD Support Group sent the following email to them:
Thank you for your email of Friday, 15th saying you would get back to me with a detailed response as soon as possible.
In my email of Friday, 15th, I gave a deadline for replying with the written commitment by end of Monday, 25th (yesterday). But, I now notice that I omitted to specifically state that the ‘reply’ was to be the ‘firm, written commitment’ which was the message I had intended and had meant to convey.
Since my original deadline may have been somewhat confusing, and for that I apologise, I am extending the deadline for the ‘firm, written commitment’ (as detailed in my email below), to end of day this Friday, 29th October. After that time, I will open a new complaint.
I appreciate that the NHS is stretched due to rising Covid-19 cases, but we, service users, are seriously concerned by the discovery that while we were patiently waiting for the project to restart, believing that it had been postponed, both the CCG and AWP were actually carrying on with the work.
For speed of reference, I have attached a copy of the joint Terms of Reference for the ADHD Working Group.
Friday, 15 October 2021
Bristol Adult ADHD Support Group sent the following email to the CCG:
I have not yet received a reply to my email of Wednesday, 6 October (see below).
It has now been 10 months since our last meeting on 17 December 2020 and during these months, the CCG, unfortunately, has not been forthcoming with firm commitments for further meetings. The 5 February 2021 meeting was, understandably, postponed due to Covid-19 work pressures. But since then, despite promises of dates, nothing has happened other than that, as seen in current Board papers (some examples attached), the CCG and AWP have continued working on the Joint Collaborative ADHD Working Group project without the involvement of service users, contrary to the Working Group Terms of Reference.
I was sorry to hear that xxxxx is unwell, but I do not understand why our involvement in the ADHD project can only happen when there is a specialist handler present.
I remind you that AWP, the CCG, and xxxxx, xxxxx, and myself (as service user representatives) agreed to form the ADHD joint, multi-partner, collaborative working group in response to our formal NHS complaint filed on 6 December 2019. And it can clearly be seen from the Board Meeting extracts that our work is not finished.
Consequently, I have now been in contact with the Parliamentary and Health Services Ombudsman. I gave them a full and complete description and asked for their advice about how to proceed. They suggested I open a new formal NHS complaint.
I am seriously considering this. Since, however, I thought we were working well together up until February 2021, my preference would be for us to continue with the work without the distraction of a second complaint.
For this to happen, we need a firm, written commitment from the CCG and AWP. The written commitment must include firm meeting dates, a promise that postponements and cancellations will only happen after appropriate notice and after all three parties have agreed. In addition, the postponements/cancellations must have limited duration and limited frequency. Finally, the commitment must include a promise that we, the service user representatives, will receive copies of all relevant documents covering the work that was carried out by AWP and the CCG during the 10 months that we were not involved.
You should know that I gave the Ombudsman’s office permission to open a case file covering this situation in case it becomes necessary. I have the case number. I hope it won’t be needed.
Could you please reply by end of day on Monday, 25 October.
Thirty minutes later the CCG replied with an apology for the delay in replying to the Support Group’s email of 6 October and adding they are, ‘looking into this issue as a matter of urgency and will ensure we come back with a more detailed response as soon as possible.’
So fingers are now crossed!
Wednesday, 6 October 2021
Having not received any suggested dates from the CCG, the Support Group sent the following email:
Time is slipping by yet again! We have now been waiting about 9 months for a meeting date.
In another attempt to get things started, here are our dates:
They then listed several dates and asked the CCG to get back to them by end of day on Monday, 11 October.
Tuesday, 21 September 2021
The CCG replied to the Support Group’s email of 1 September saying they are,
currently looking at dates in October for a meeting to take place and will hopefully be able to get in touch next week with some suggested dates and times.
Wednesday, 1 September 2021
The CCG replied to the Support Group’s email of 27 August saying they needed to reschedule the next day’s meeting and asking for availability dates later in September.
The Support Group replied 20 minutes later giving the CCG their availability dates.
Friday, 27 August 2021
The Bristol Adult ADHD Support Group sent the following email to the CCG:
We still only have a holding invite for the proposed meeting date of 2 September for the ADHD Working Group. Could you please confirm that we will be meeting on this date?
I am asking this because I’m concerned to read in public documents that, contrary to our Terms of Reference, BNSSG and AWP have continued working together on ADHD matters after the working group sessions were put on hold. We, the service user representatives, were told the sessions were put on hold due to Covid-19 pressures.
In return, the Support Group received received bounce back holiday messages from key personnel at the CCG and AWP saying that they would be on annual leave during the first week of September, so the Support Group sent this follow-up email, on the same day, to the CCG:
I see from automatic replies (copies attached) that neither xxxx nor xxxxx would have been able to attend the proposed meeting date of 2 September. They are both on annual leave.
Could you please let me know what BNSSG intends for the proposed meeting on 2 September?
Also, if the meeting still goes ahead, will there be someone present from BNSSG who can provide us with written updates about the work done outside the working group?
Friday, 13 August 2021
The CCG replied saying that they had reviewed their colleagues’ diaries and suggested a meeting date of Thursday, 2nd September.
The Bristol Adult ADHD Support Group responded immediately and said they were available for the meeting on 2 September.
Wednesday, 11 August 2021
We heard nothing more from the CCG so today we sent the following email saying that we were pleased to see that the CCG agreed that it was ‘critical that we put in time as a group together to discuss how we move forward’ and gave them the dates for the remainder of this month and September when we are not available for meetings.
We added, as a gentle reminder, that ‘under the Terms of Reference (TOR) for our multi-partner, collaborative working group (agreed at the Local Resolution Meeting on 28 April 2020), the working group’s purpose and objective is not only to address the waiting list but also to devise an effective and sustainable ADHD service model; including a service user participation forum‘ and we attached a copy of the Terms of Reference.
We also attached copies of extracts from the CCG’s April 2021 Performance and Quality Report and the June 2021 Corporate Risk Register (both presented to the CCG’s Governing Body on 6 July 2021) to help illustrate that there is still work to be done to address the concerns raised in our original letter of formal complaint sent on 6 December 2019.
We finished by asking them to come back with some potential dates for meeting by end of day on Friday.
Shortly after, we received an email from the CCG saying they will check our dates against their calendar and ‘hopefully get something pencilled in.’ They apologised for the delay.
NB: It’s stated in the CCG’s Performance and Quality Report for April 2021 that the waiting list is now static at 3 years so we have accordingly amended the title of this post.
Tuesday, 13 July 2021
The CCG replied with a brief email thus:
Thanks for replying; as you say, it’s critical that we put in time as a group together to discuss how we move forward; once we have a clear picture of where the service is (current waiting list / demand, status of the LES in Primary Care etc), so that we can have something tangible as a group to work with. Will look into timelines and diaries and come back as soon as I can around this.
Monday, 12 July 2021
We replied to the CCG saying we were concerned with their statement that ‘AWP and CCG teams are currently working together to explore options for how we might address the long waiting lists’ because this is ‘being done without [service user] input which means not only is an important source of insight and information being overlooked, it is also contrary to our Terms of Reference. We can help with these actions and we want to help.‘
We also pointed out that while we appreciate that everybody has been working hard on Covid-19 related matters, our work on the ADHD waiting list and the ADHD service model has now been paused for 6 months.
Friday, 9 July 2021
We had heard nothing more from the CCG (since their last email of 3 May) until they sent us the following email on this date:
Further to [Bristol Adult ADHD Support Group’s emails of 6 & 21 April] and communications between us all in early June [NB: the support group was not a party to these June communications], I just wanted to provide a further update to you all. The working group sessions remain on hold; the ADHD service continues to see significant pressures with long waiting lists and resourcing issues, even when taking into account some additional funding offered by the CCG, this has made it difficult to make the tangible progress we would need in order to convene an effective working group session. AWP and CCG teams are currently working together to explore options for how we might address the long waiting lists which still exist for the service . . .Appreciate that it has been some time since we have all met as a group, but rest assured that this remains an absolute priority for both AWP and the CCG.
Monday, 3 May 2021
We received a follow-up email (to their email of 21 April) from the CCG saying they were ‘very keen to catch up with the full and core ADHD working group, but we do need to have progress made on the actions identified from our last meeting, otherwise we’re not making the most effective use of our collective time.
Whilst the immediate pressure of C19 cases is lower across the area, I believe there is still significant pressure on my colleagues from the commissioning team, as well as all of the AWP staff, so I suspect it will be another week or two before I’m able to get them to respond back to my requests.’
Wednesday, 21 April 2021
We resent our email of 6 April 2021 because we had not received a reply and on the same day the CCG replied that they were ‘linking in with colleagues to follow up on the actions we captured in our last working group session, to ensure we are able to make progress in our next meeting. Will be in touch with a further update as soon as possible.’
Tuesday, 6 April 2021
On this date we sent an email to the CCG asking if the ‘Covid-19 pressure has eased up enough that we can start considering dates for the next full working group as well as the core group meetings?‘ because we had not heard from the CCG about the promised March meeting.
Tuesday, 2 February 2021
We received an email from BNSSG CCG notifying us that they’d taken the decision to stand down the next scheduled meeting (Friday, 5 February 2021) and reschedule it for March because they were experiencing increased pressures on local NHS and care system, as coronavirus cases continued to rise and more people required hospital treatment.
Up until this date, we had been working diligently towards resolving the waiting list issue and reviewing the service model. We will be continuing this work when Covid-19 pressures allow.
Tuesday, 28 July 2020: Good News
The Bristol Adult ADHD Support Group, the Bristol, North Somerset & South Gloucestershire CCG (BNSSGCCG) and Avon and Wiltshire Mental Health Partnership NHS Trust (AWP) have been working together, at pace, in a joint, multi-partner, collaborative working group with the dual purpose of addressing the waiting list issues as a priority while, at the same time, methodically analysing problems that led to the waiting list and then devising and implementing solutions.
The end goal of the working group is to have an Adult ADHD Service that assesses people within the 18 week target and is cost effective (now and in the future), that effectively and efficiently integrates care, is high quality, safe and gives service users a positive experience. It will meet legal duties, NHS Quality Board’s definition of quality (safe, effective, caring, responsive and person-centred), as well as NICE Guidelines & Standards.
It will be an Adult ADHD Service that everyone can be proud of!
On Friday, 5 June 2020, formal Terms of Reference for the working group were adopted and we agreed ways of working and communicating.
The Core Working Group (CWG) is now having weekly working meetings and is updating the Full Working Group (FWG) on a monthly basis. In turn the FWG is giving monthly progress reports to the CCG’s Commissioning Executive Committee (CEC) for their feedback and/or approval. BTW: we are all working & meeting online & we are working well together.
We are working as hard and fast as we can while balancing accuracy with speed. The waiting list is an urgent priority.
We will periodically update this page with progress reports.
Monday, 17 February 2020
I’m afraid we were overly optimistic as progress seems to have stopped so today I sent two emails as follows:
I realise that everyone is busy but it has now been 3 weeks since I sent the list of dates for which we are unavailable for a meeting and I have not yet had a reply.
Do you know if any progress has been made in arranging this meeting with the CCG, [Clinic staff], members of the joint CCG and AWP ADHD Working/Project Group, and [seAp Advocacy]?
To date, it is 6 years and 10 months since the funding level for the clinic was set and it has been 5 years and 10 months since the then Bristol CCG recognised that the funding level was inadequate.
Furthermore, the Bristol Adult ADHD Support Group met on Friday, 14 February, and it rapidly became apparent that the waiting list (2 years and growing), without any doubt, is putting already distressed people at increased risk of harm. In addition, the group members already assessed strongly reiterated their support for the clinic as well as their high regard for the staff whilst also expressing concern that the ever increasing waiting list is now putting too much pressure on the service as a whole.
As a polite reminder, I have reattached my original letter of Friday, 6 December 2019; sent 2 ½ months ago. Everything stated in this letter regarding the CCG’s responsibilities as well as our offer of help still stands.
Please note, I have also cc’d Mr John Penrose, MP on this email since I understand he is making enquiries into the inadequate funding for NHS ADHD services on behalf of constituents and I am also his constituent.
43 working days have now passed since you received my FOI Request.
During that time the deadline for the CCG’s response has been extended twice from the original date of Tuesday, 14 January 2020; first to Tuesday, 28 January (need time to finalise the response) and then again to Monday, 3 February 2020 (for review by a Director).
It has now been 10 working days since the CCG’s last deadline expired. Could you please, therefore, conduct an internal review into the handling of this matter. My original request for information can be read at the end of this email chain.
Wednesday, 22 January 2020
We’re making progress, slow inching progress, but progress nevertheless. We filed a Freedom of Information request with BNSSG CCG on 12 December 2019 for documents they described in their minutes (discussions about the Adult ADHD service) but had not made available online. The CCG, in response, told us they needed more time to ‘finalise’ their response and they expected to release the information by 28th January.
As a result, we’ve asked that our meeting take place in mid February so that we have time to review the documents. And we’ve listed the other people that the CCG needs to invite to the meeting ‘in the interests of transparency and because [the waiting list] is a very serious problem that needs an open and collaborative partnership between the CCG, AWP, and service users.’
Thursday, 9 January 2020
Since we filed our complaint with Bristol, North Somerset and South Gloucestershire Clinical Commissioning Group (BNSSGCCG) on 6th December 2019, some progress has been made as follows:
1.BNSSGCCG have proposed that they hold a meeting this month (date tbd) with us (service users), the ADHD Clinic staff, and others from Avon and Wiltshire Mental Health Partnership NHS Trust (AWP). We are now waiting to hear from all attendees.
2. The CCG have also sent a proposed agenda which needs some amendments.
3. We have notified Healthwatch Bristol, North Somerset and South Gloucestershire (Healthwatch BNSSG) about the problems with the waiting list and sent them a copy of our complaint. We will be talking with them tomorrow, and they will be investigating the issues around the waiting list. We have also been in communication with Healthwatch England who are aware of our complaint. Healthwatch England have said that they will assess and evaluate the results of Healthwatch BNSSG’s investigation for national implications.
Saturday, 7 December 2019
The waiting list for the Bristol NHS Adult ADHD Clinic is now 2 years (plus) for people living in Bristol. We weren’t sure what Bristol, North Somerset and South Gloucester Clinical Commissioning Group (BNSSGCCG) were doing about it, if anything, so we decided to try and find out.
First, here’s a little bit of background. Clinical Commissioning Groups (CCGs) were created in 2012 when the new Health and Social Care Act came into being and they opened their doors on 1 April 2013. The CCGs are membership bodies made up of the local GP practices and they are led by a governing body also made up of GPs some clinicians, nurses and lay people. The CCG buys (commissions) all the health services (physical & mental health) that we use within our local areas. For example, the BNSSGCCG has a contract with Avon & Wiltshire Mental Health Partnership NHS Trust (AWP) for the Adult ADHD service for all who it in the Bristol, North Somerset and South Gloucestershire Area.
Now before buying a service such as the ADHD Clinic, the CCG should determine the level of need in the community as well as the amount of funding they’re going to need for the service currently and into the future. In other words they need to plan for increasing demand They should also plan for future demand as people become more aware of ADHD and ADHD services. And this is where things can go wrong as it has done for BNSSGCCG.
In 2013, for whatever reason they didn’t plan for the number of people in the greater Bristol area who would need an ADHD service and they didn’t pay attention to the increasing number of people being referred to the clinic and they didn’t listen to the Clinic’s warnings. And now there’s a very long waiting list.
And now we go back to where we left off in the first paragraph of this post: we were going to do some research. We did, and didn’t like what we found, so yesterday we sent BNSSG a letter with an appendix containing 33 pages of evidence. The appendix can be read here and the letter is below:
6 December 2019
Dr Jonathan Hayes, Clinical Chair
NHS BNSSG Clinical Commissioning Group
Dear Dr Hayes,
Re: OPEN LETTER: Serious concerns about BNSSG’s handling of the Adult ADHD Service waiting list
I am the Chair of AADD–UK and the founder and facilitator of Bristol Adult ADHD Support Group; both running continuously for 12 years. I’ve contributed to the NICE ADHD Guidelines and Quality Standards and I’m a member of the NICE ADHD Implementation Group. The latter was charged by the Department of Health and Social Care with highlighting challenges and developing solutions for implementing NICE NG87 ADHD. Commissioners are responsible for enabling patient use of the Guidelines not only within the context of funding but also within context of their legal duties of eliminating discrimination, advancing opportunities and reducing health inequalities.
I am writing this letter on behalf of service users who potentially have ADHD as well as those who have the diagnosis. The Bristol Adult ADHD Service does not know that I am writing this but as a matter of courtesy I have sent them a copy. The number of people expressing distress about the length of the waiting list for the Bristol Adult ADHD Service is steadily increasing. Since I needed to understand the background to this situation, I read all available BNSSGCCG’s minutes and reports. And I now have very serious concerns about BNSSG’s management of the waiting list.
In April 2014, one of the CCG’s operational delivery projects for the ADHD service was to ‘achieve funding’ to resource its then current growth. Since that date, referrals have risen exponentially but the CCG left the funding at the 2013 level—despite receiving warnings from the service. They have also been underspending on ADHD services to help offset overspending on IAPT and mental health placement commitments. The Clinic staff from 2014 to date, continuously tried to increase capacity to match the ever-growing demand until it seems they could do no more. The CCG refused to increase funding and favourably compared the 2-year ADHD wait time (keeping ‘inappropriate costs’ down) with the 2-week wait time for Cataract surgery. Furthermore, there’s no evidence the CCG made any effort to understand the needs of people with ADHD. There’s also no evidence of engagement or involvement with patients. See Appendix A for details, comments (blue text), as well as questions for the CCG (green text) to answer.
The CCG’s decisions and actions means it is violating the principles, values and objectives as set out in their ‘Constitution’, their ‘Equality, Diversity and Inclusion Strategy’, their ‘Ethical Framework for Decision Making’, their ‘Procurement Policy’ as well as the ‘NHS Constitution’, the statutory guidance for ‘Patient and Public Participation in Commissioning Health and Care’ and the ‘Good Governance Standard for Public Service’.
Furthermore, these decisions and actions have potentially put the CCG at risk of being in breach of their legal duties to reduce inequalities, eliminate discrimination, promote involvement of patients and obtain appropriate advice as set out in the Health and Social Care Act 2012 and the Equality Act 2010.
First, I ask the CCG to review their decisions and actions in line with these principles, values and legal duties and to make amends. Secondly, I ask the CCG to answer my questions in Appendix A.
I have written this letter, however, not just to express my serious concerns and to ask for amends, but also to offer my help to the CCG. I can help the CCG understand the importance of a fully functioning Bristol Adult ADHD Service. Indeed, it is held in high regard by service users. Appendix C contains lists of service user comments extracted from the ADHD Service’s quarterly and annual reports (released by the CCG in response to a Freedom of Information request). I can confirm the compliments in these lists match the feedback I hear at support group meetings as well as those from my networks. If anyone at the CCG is interested in learning about the lived experience of ADHD, I can help with that too. In fact, I am willing to invite relevant personnel to support group meetings so that they can directly hear from others about their needs.
ADHD is a serious neurodevelopmental disorder that can affect about 2-4% of adults. It is complex and difficult to diagnose. Many adults who were not diagnosed in childhood or were misdiagnosed will have developed co-existing disorders which act to amplify the symptoms and increase the complexity of assessments and diagnosis. ADHD symptoms can cause significant impairment across all domains of adult life (e.g. interpersonal relationships, education and work) and negatively impact health-related quality of life. It is cost effective to fund appropriate and timely treatment.
Please respond by Friday, 20 December 2019. I am currently considering further actions.