Views & Experiences of People Accessing or Requiring ADHD Support Services

Summary

Healthwatch Stockton-on-Tees began working with a Care Navigator from the Stockton Community Mental Health Team based at Wessex House. They introduced us to Larissa.  Larissa has a diagnosis of ADHD and shared with us her experiences of living with the condition, the challenges she faced and what positive changes she thinks could be made to help others experiencing similar difficulties within the community of Stockton-on-Tees. 

Larrissa became a Healthwatch Stockton-on-Tees Champion and supported us to publish a ‘Case Study’ that helped us to gather additional feedback and intelligence from the local community about their experiences of ADHD, awareness of information, referral pathways and any challenges that are being experienced. 

Larrissa’s Story. 

While waiting for a diagnosis Larissa looked online for support and found that information was confusing and written in a format that was difficult for a person with ADHD to understand and gain information easily.  At the time of writing this report there were no leaflets available for advice either before or after diagnosis and Larissa feels this would have been enormously helpful for both her, friends, family, and carers.

“The symptoms of ADHD can often lead to isolation as its quite often a struggle to maintain relationships. Therefore, mental health issues can develop through lack of support during a crucial time.”

Larissa strongly feels that if the right support had been available earlier in her journey, her mental health difficulties may not have developed. Larrissa described how medication is often prescribed following confirmation of diagnosis but is not always suitable for everyone. Although medication may help with symptoms, isolation remains a major factor, with delays having a significant negative impact. 

Larissa believes that ADHD testing completed in schools would have made a big difference to her life and thinks that this could be a positive change for the future. 

“No diagnosis can leave you feeling that there is something wrong with you and not able to ‘fit in’.”

Larissa felt that early diagnosis would allow for the right support to be put in to place at the appropriate stages. This in turn may prevent mental health problems and possibly reduce crime with a lot of people remaining undiagnosed. 

During the planning process of this workplan item, it was brought to our attention by Healthwatch England that the waiting times for an ADHD assessment are now reaching 10 years in places, and that in many cases regardless of a diagnosis there was significant delay in receiving the required medication or treatment. 

After discussions with professionals and the Healthwatch Stockton-on-Tees Executive Board it was decided that we would carry out additional engagement throughout October - December 2023 to identify opportunities to improve service delivery, while supporting Larissa to develop a Peer Support group for those awaiting diagnosis, families, friends, and carers. 

To ensure this research was accessible we used various methods of engagement to gather feedback including surveys, focus groups, drop-in sessions and one-to-one meetings with professionals and service users.

We spoke with Carers, Service Users, and Professionals to determine what their main concerns are and to inform how services can be improved, ensuring a person-centred multi-agency approach in the decision-making and planning process. 

All the feedback gathered has supported the recommendations for the local area, common themes included.

• Extensive waiting times – no clear timescales available.
• Lack of understanding or awareness of ADHD and the impact on individuals and families.
• Unclear referral pathways.
• Lack of adequate signposting to helpful information, including coping strategies.
• Questions were raised regarding private assessments – some GPs would not accept a private diagnosis for prescription purposes.
• Some professionals in other health and care services were found not to be supportive of individual needs, such as displayed behaviours and allocation of appointment times.
• The people we spoke to overwhelmingly described how peer support would prove highly beneficial in improving wellbeing, providing the ability to share coping mechanisms, have a better understanding of the condition and potential strategies to mitigate poor mental health outcomes. 

Findings

What matters most to people in Stockton-on-Tees

This engagement gave us the opportunity to have targeted one-to-one conversations with a wide variety of people with a specific focus. We were able to speak with Families & Friends, Carers, Service Users and Professionals to gather information that will be used to help inform decision makers, with a view to supporting the future development and planning of services for those with, awaiting assessment or supporting and caring for people with ADHD.

This focused engagement identified challenges within the NHS and commissioned providers, the assessment process, waiting times and the overall impact on the wellbeing of service users and their carers while awaiting assessment. 

Of the people we spoke to, 64% told us they were not told how long the wait would be for an assessment. 

“I was advised not to contact the assessment team regarding the waiting times as this would not be disclosed, even my GP doesn’t know, this is unbearable for someone with ADHD traits.”

“I was told it would be 2 years, it has now been 3 and still no date.”

“It’s been 8 years and I’m still in the process.”

66% of people who provided feedback told us that they went to their GP for a referral, 20% sought advice from their local school. 55% of people told us they did not receive any additional information at the point of referral to provide advice and guidance regarding ADHD.

During our conversations some people told us that they had decided to go for a private assessment, however this was proving problematic as some GP’s were not accepting a private diagnosis: this was leading to challenges in receiving support and medication. 

Once a referral had been made 67% told us they still did not receive any additional information that they feel would have been helpful, however 33% did, this comprised of website details, leaflets, and signposting. This demonstrates an inconsistency with referral processes. 

Some people told us it did impact their ability to access other health and care services, appointments were problematic with professionals being unsupportive of specific needs. 

“Unable to disclose there is an appointment until the last minute, Dentist is not supportive of needs.”

‘’As a carer for a child with complex needs, I feel that the services need more awareness raising around neurodevelopmental areas. This is not the first time that I have considered raising this, but it’s the first time I have had the opportunity. I was advised there was no feedback route for under 16s.”

Of people who spoke to us who had received a diagnosis 80% had received medication, 50% of those reported a delay in receiving the medication. However, 89% of people receiving medication did say it had helped. 

“Waited approximately 6 years before being prescribed Melatonin for sleep problems.”

We wanted to use this opportunity to find out what support people used to help them now, counselling did feature in the responses along with STEPS (an SBC support team for people with disabilities). However, there was a clear picture that people did not know where to go for support and the negative impact that this has on their mental health. 

“None, just a supportive family doing the best they can with the limits of what they're able to understand and offer.”

“I’ve heard ADHD described as a superpower. ADHD as a 'superpower' really negates the experiences we have and the lens we navigate the world under, it minimises the support and assessment - we should be able to access. The current system has unacceptable waiting times, services are actively withholding information about timeframes, no other support is offered, and the direct outcomes of this, including poor mental health from anxiety and depression to suicidal ideation are at a high. Myself and others on the waiting list have come to realise that ADHD’ers do have one superpower: the power of invisibility.”

“Nothing from healthcare. When I got my diagnosis privately TEWV discharged me and I no longer have any support from the private clinic, which was minimal at best and very expensive.”

“I get some reasonable adjustments at work, but they are mostly just what helps me survive with the hopes it will make me work exactly like everyone else rather than helping me thrive and utilising my unique skills.”

Family and friends were viewed as the biggest form of support, but with little advice and guidance from professionals it was felt that people just did the ‘best they could’ with the little information they had. 

One person told us that the school was being helpful and looking for unique ways to support her child, including the introduction of an egg timer to assist with concentration.

We asked people what coping strategies they found helpful in dealing with day-to-day situations, exercise featured heavily with most people reporting this was a good benefit. Other strategies were mindfulness, breathing techniques, online support groups, listening to podcasts, apps that included planners and timers. Fidget spinners were mentioned as a good tool, particularly in schools.  

The people we spoke described how the ability to meet people in similar situations to talk would be a great source of support, not only for them but for friends and family, having a better understanding of ADHD, the impact and how it can be effectively managed would make a positive impact on lives. 

It was felt that there is not enough knowledge and understanding of the condition on a broader scale, including professionals, employers, and parents and carers. People described feeling as though they had to find ways to ‘fit in’ as opposed to their differences being understood and reasonable adjustments made to support them to live in an inclusive way. 

“Embracing my neurodivergence and moving away from trying to do things the way others do them just because I feel like I'm supposed to.”

“I try to make sense of who I am and be able to function rather than feeling I'm a terrible person. This has been useful to some extent in understanding myself and not feeling alone, many online group members are USA-based, so their experiences are vastly different.”

Recommendations

This focused engagement work has highlighted areas that could help to improve the lives of those living with the effects of ADHD – both prior to and post assessment. 

Valuable feedback received has informed the following recommendations:

• Communication – Clear, timely and appropriate information to be made available at the point of first contact, providing easy read information about the potential impact of ADHD, reasonable adjustments that can be made and highlights coping strategies and signposting to appropriate sources of support. Information made available to families and friends would also help to provide a positive approach to awareness raising, social understanding and support, to help alleviate feelings of isolation. 
• Training – Feedback received highlighted a broad lack of awareness of the impact of ADHD from professionals within health and care services, schools and employers. GPs were reported as being inconsistent in their approach and information and advice shared was sporadic. Clear training and messaging demonstrating an inclusive, consistent approach to information and support needs to be embedded within recovery plans to continue to raise awareness of the growing issue. As local wellbeing services continue to develop, including the planned Stockton-on-Tees Wellbeing Hub – robust training plans for frontline staff should include the awareness of ADHD, impact, referral pathways and coping strategies to support the development of a community approach to wellbeing.   
• Parent Classes and Peer Support Groups – It was clear throughout our engagement that people felt that they would benefit greatly from having the support of like-minded people who could support them on a personal level, to help alleviate isolation and build positive relationships. This could provide a positive learning platform that communities could develop at a local level.  
• Exercise and Mindfulness – Many people told us that their main sources of coping were exercise, mindfulness techniques and activities within the community to alleviate isolation and empower them to manage their condition. As the cost-of-living crisis continues it is important that consideration is given into how community activities can be developed and maintained with appropriate support and funding. Supporting people to develop positive relationships and alleviate isolation, while feeling happy and safe within the environments that best caters for their individual needs, is the way forward. 
• Joint Working – As current health and care systems are changing there is a strong focus on better collaboration and joined up care to improve outcomes for people. The Integrated Care Systems (ICSs) have been set up to make this happen – with a focus on prevention, better outcomes and reducing health inequalities. These systems include NHS organisations, local councils, the voluntary sector, social care providers and other partners with a role in improving local health and wellbeing. In order to facilitate community development adequate funding and support needs to be available to promote positive system change while improving outcomes in population health, tackling inequalities in outcomes, experience and access.