Catherine Hinwood
2024 Global Conference Speaker
Biography
Deputy Director, Chief Delivery Office, NHS England
Catherine was appointed NHS England’s ADHD Programme Director in December 2023. She leads NHS England’s work to improve service provision and experience for those with ADHD and their families and supports its ADHD taskforce. Catherine is also NHS England’s Domestic Abuse and Sexual Violence Programme Director. Catherine was awarded an OBE in King Charles’s first honours list in 2023 and received the 2023 University of Technology, Sydney Law Alumni Award. Catherine is an Adjunct Fellow of the Law Faculty of the University of Technology, Sydney.
Exclusive and First update on The NHS ADHD Taskforce and ADHD in England
Catherine Hinwood OBE is the ADHD Programme Director for NHS England. We are extremely grateful and pleased that she has agreed to come to our conference. She is responsible for the ADHD in NHS England and has the over-arching responsibility for the NHS ADHD Taskforce.
Catherine will be providing an update for everyone for 30 minutes. She is giving a lot of time for questions, and there will be an extended 30-minute Q and A period.
Use the Comment field below to ask a question for the Q&A section
What outreach work is being done to help individuals in ethnically and culturally diverse communities know what ADHD is? Help those with ADHD get support? And, where needed, help challenge attitudes about ADHD in those communities.
We have wait times that are technically in thousands of years (Sheffield) What are you going to do about that?
A BBC report showed many children being dropped between CAMS and Adult Service. Often for 2 years. What are you going to do about that?
Labour has promised to target NHS services being delivered to the 18-week promise. We’re not consultant-led – so not a service that is covered by the 18-week promise. How do we know we’re not going to be further ignored as the NHS instead pushes resources to the 18-week services?
Hi Catherine,
What funding is the NHS putting behind ADHD?
And what is the timeline for the task force to achieve actions?
Thanks
There is a waiting time dashboard for Autism assessments. Why isn’t there a dashboard for ADHD Assessments?
Oxfordshire GPs are refusing to provide ADHD medication because the ICB hasn’t commissioned annual reviews. A lot of people are facing a medication precipice. What are you going to do about that?
Hi Catherine
I hope this message finds you well. I would like to ask a couple of questions regarding ADHD care with private providers providing services to the NHS under RTC.
Firstly, what plans do you have to ensure that private providers with NHS contracts are delivering appropriate levels of care for both their private and NHS patients? If private providers aren’t meeting the expected and adequate levels of treatment and care for their private patients, do they have their NHS contracts pulled, and are they still profiting from charges incurred by the NHS? How does the NHS regulate and monitor the adequacy of these private providers and the services they offer under the Right to Choose?
Secondly, are there any plans for improving the care of primary care providers, such as GPs, to enable them to be more confident in their knowledge and treatment of ADHD?
As a private patient, I faced significant challenges due to a lack of education surrounding ADHD and inadequate signposting regarding my right to choose. This led me to incur costs nearing £4,000 for an assessment but still resulted in inadequate care, including medication errors and poor communication from the provider’s team. This inconsistency in treatment affected my employment and resulted in disciplinary actions. Despite raising complaints, I found the responses inadequate, and there were threats made regarding the removal of shared care if renewal fees were not paid, which were unjustifiably high.
This situation has ultimately led to my discharge from the service and a critical lack of access to necessary medication, which I consider vital for my well-being.
Would you be open to discussing these issues privately to explore how they impact both patients and the NHS, particularly from a financial perspective?
Thank you for your time and consideration.
The UK has a quirk in that non-medically trained staff are responsible for medical evaluation and referral for assessments. Teachers in schools have referral responsibility but don’t have the training to do so. Being missed at school is so consistent and obvious that adult ADHD Assessments use school reports. Girls are particularly missed. What work has the NHS done to review the failure of teachers to reliably refer? What approach do you think is needed going forward? Is the NHS going to start a training program for teachers? If not – why not? And if not – should the approach away from these non-medically trained people be changed.
Many people give up waiting and obtain private diagnoses if they can afford them, myself included. But NHS GPs are unable to titrate or treat with medication due to lack of training, meaning lots of us are left with a diagnosis but no choice but to get back on the year-long waitlist.
Are there any plans to train and support GPs to be able to prescribe and treat ADHD medicinally? Imagine it’s similar to finding the right medication for anxiety and depressive disorders through titration.
What are the intentions of expanding PINS (Partnership for Inclusion of Neurodiversity in Schools) to more Schools within the UK?
1. Autism has a central waiting list and NICE recommendations a maximum waiting time. Will you commit to ensuring the ADHD has a central waiting list and recommended waiting time
2. What plans do you have to reduce the waiting time
3. Will you be having consultations with the public and those that struggle every day
4. What reassurance can you give people of the UK who are struggling and are desperate for support
Through my work’s private cover and following a medical, I was sent to a psychiatrist for evaluation of my anxiety medication as they had never been reviewed. He recommended I get tested for ADHD as I demonstrated many traits. I paid for that myself due to the 5 year waiting list with the NHS. I then had to revert back to the private psychiatrist to work through medication options and dosage which took nearly 7 months. He then sent my NHS GP a shared treatment request and plan. They were very unhelpful and were not keen at all at taking it on. This was 5 1/2 years ago. The new NHS GP is very similar when dealing with private specialists. Why is this the case? It is very demotivating to have to negotiate someone to help me manage this. I can’t afford to continue to do so privately and the hard work, as in the testing has been done. It is so stressful. What is being done to help us? I am 55 years old and if this had been picked up when I was a lot younger, my life would have been much better.
With more people turning to Right to Chose and private diagnoses due to years and years of wait time on the NHS referral pathway. The NHS teams seem reluctant to accept these pathways for diagnoses so that any future support requires re-diagnoses and a wait on the same overly long NHS wait list, leaving people without access to appropriate medication and other support, despite the staff working for alternative providers often working alongside NHS posts. Can you include within your work a review of pathways and attitudes of NHS teams. I love the NHS, I am a former NHS worker myself and I expect that these opinions are often driven by the immense pressures that the staff are under themselves but to me they represent an organisational based stigma.
What is the digital strategy for ADHD management? Diagnosis and waiting lists are not the only issue, people do not have access to the right information at the right time. There needs to be a plan around this.
Good afternoon all,
1) What are the key milestones of the NHS ADHD Taskforce over the next two years.
2) What are the plans to achieve those milestones?
3) Have you identified pilot sites/trusts roll out such initiatives and if so, what are those sites?
What research is being done on the impact of peri menopause and menopause on ADHD and subsequent treatment? In my experience, I have not found a Dr knowledgeable about ADHD and hormonal health and I have had to face my mid-life unsupported and struggling with much more severe difficulties.
How can providers engage with the Taskforce to be a part of the conversation and support building the solution?
I would like to ask a couple of questions regarding ADHD care with private providers providing services to the NHS under RTC.
Firstly, what plans do you have to ensure that private providers with NHS contracts are delivering appropriate levels of care for both their private and NHS patients? If private providers aren’t meeting the expected and adequate levels of treatment and care for their private patients, do they have their NHS contracts pulled, and are they still profiting from charges incurred by the NHS? How does the NHS regulate and monitor the adequacy of these private providers and the services they offer under the Right to Choose?
Secondly, are there any plans for improving the care of primary care providers, such as GPs, to enable them to be more confident in their knowledge and treatment of ADHD?
As a private patient, I faced significant challenges due to a lack of education surrounding ADHD and inadequate signposting regarding my right to choose. This led me to incur costs nearing £4,000 for an assessment but still resulted in inadequate care, including medication errors and poor communication from the provider’s team. This inconsistency in treatment affected my employment and resulted in disciplinary actions. Despite raising complaints, I found the responses inadequate, and there were threats made regarding the removal of shared care if renewal fees were not paid, which were unjustifiably high.
This situation has ultimately led to my discharge from the service and a critical lack of access to necessary medication, which I consider vital for my well-being.
Would you be open to discussing these issues privately to explore how they impact both patients and the NHS, particularly from a financial perspective?
Why is there no mention of the co morbidities of ADHD on the NHS website especially addiction on suicide.
Does the NHS recognise these co morbidities ?
If it does why not mention them or link to them on the NHS website ?
I’m an autistic and ADHD Expert by Experience and Peer Support Worker, working with and for neurodivergent adults within a community NHS mental health service. I’d like to ask 2 questions –
1) How will the ADHD Taskforce use co-production with Experts By Experience and Patient Voice forums to inform their work? Will there be a lived experience advisory group (similar to that within the NHS England Autism & LD programme), and where can people go to get updates on this?
2) How will the Taskforce support all NHS staff to develop better understanding and support for the needs of patients with ADHD? Following the roll out of the Oliver McGowan Mandatory Training on Autism and Learning Disability across the NHS, I would like to call upon the Taskforce to consider developing an equivalent progamme of mandatory ADHD training for all NHS staff.
One of the common issues that causes longer waiting lists is a lack of clinicians to diagnose and a lack of prescribers. What are your plans to improving this workforce issue? How will you recruit people, especially without nhs bursary for university, and the fact university courses are incredibly expensive! Will you offer train-on-the-job routes?
For example for the whole of Dorset there is only one NHS prescriber for adult meds!
Is the commissioning for assessment is going to be integrated with autism pathways and the rest of the neurodevelopment pathways
Why can we not get melatonin prescribed for adults? I was prescribed strong sleeping tablets which made me ill and I ended up in hospital. I now have to get them from abroad, as advised by my doctor. Melatonin must be prescribed.
I wanted to ask about what service provision you have planned for adults awaiting diagnosis, the waiting lists are very very long.
Also, medication isn’t always the answer, what else will be provided by the NHS specifically to help those with adhd?
Will occupational therapy be made widely available for adults with sensory issues and adhd?
ADHD Meds are available again but the system is still seriously failing people with ADHD.
At the moment
-I have to order my prescription in person or via email a minimum of 48 hours before I can collect it.
-I can only order my meds 7 days before I run out.
-I have to order via email or go to the surgery as I am not allowed to order my meds over the phone.
-Requests are often not actioned by the GP especially via email, and I have to request my meds again.
-Sometimes the pharmacy has received the prescription but has failed to order the medication so I need to go back again.
-This means that on multiple occasions I have run out of medication before I get the new batch, which can be catastrophic.
-All of this means I am never certain that I will have the meds I need to function in a world not built for me and this constant nagging stress has a significant effect on my mental health.
-The level of executive function needed to navigate all this would tax a neurotypical person so for those with ADHD the stress around this is intolerable.
I’m doing my bit by setting multiple alerts to remind me to order my meds on time and constantly ask if there is a better way to do this. It seems there isn’t and no one wants to find one.
What will the NHS do to make accessing ADHD medication more ADHD friendly because currently it feels like the system is specifically designed to exclude, mock and punish people like us.
What about ADHD care in Wales? Adults and children. Why isn’t more help being offered for those diagnosed and those waiting for a diagnosis?
Two questions:
1/ With a significant number of people having both ADHD and ASD is there any way of screening for / diagnosing one when assessing the other?
2/ There are problems getting an ADHD diagnosis if you have a trauma background due to overlapping diagnostic criteria. Is there any work being done to address that?
Have you considered that for every new ADHD diagnosis of a middle age person there is likely a MISDIAGNOSIS to be crossed off the list?
If not it is double bookkeeping.
Why is the focus on the increase in demand for diagnosis and not the lamentable track record MISDIAGNOSIS ?!?
Have you considered that for every new ADHD diagnosis of a middle age person there is likely a mis diagnosis to be crossed off the list?
If not it is double bookkeeping.
Why is the focus on the increase in demand for diagnosis and not the lamentable track record MISDIAGNOSIS ?!?
Anonymous on October 3, 2024 at 8:26 pm
One of the common issues that causes longer waiting lists is a lack of clinicians to diagnose and a lack of prescribers. What are your plans to improving this workforce issue? How will you recruit people, especially without nhs bursary for university, and the fact university courses are incredibly expensive! Will you offer train-on-the-job routes?
For example for the whole of Dorset there is only one NHS prescriber for adult meds!
I used to work for NHS England, the neurodiversity working group staff network was the best staff network I’ve ever been part of. I miss them greatly!
Great presentation. Thank you.
I was late diagnosed and before diagnosis (at 50) ended up in A and E several times. Early diagnosis would save the NHS a lot of money and resources.
Great presentation, can see the passion and the drive to make a positive difference.
I’m a Lived Experience Influencer with the NSPA (National Suicide Prevention Alliance) and would love to engage with NHS England on the specific issues facing people with ADHD. Jess Worner is the LE lead there. Do reach out!
I’m 52. Bilingual. Grew up in a different culture. My initial assessment ifew months backn England was badly done. And xame back as no adhd.Since I redone it privately in my home country. The assessor was much better qualified. I’m now diagnosed with mixed adhd with severe impact on my life. My GP can’t use the assessment from Poland. Which is beyond my understanding. I know will have to seek psychiatrist support in Poland , privately. At least in the UK I’m trying to get some support through Access to Work.
Additionally. Lifetime of weight issues and depression, now diabetes, high blood pressure… yet the gp surgery can’t help me… they put a plaster on a broken leg.
Thank you, Catherine. Id be happy to share experience in depth and I do hope thongs get better soon.