I remember when I was about 17, staring out of the window and watching the rain on a wintery afternoon. I sat in a history lesson, silently thinking, “what the fuck is wrong with me?.”My history teacher had just come over to check an essay I had written, “Historians are not judges or juries,” he said, as yet again I had put too much emotion and an “I don’t agree with this” attitude into writing that had to remain factual and research based. I was never very good at that. That day I was thinking about a million different things, anything but the course work in front of me. The prospect of applying for uni soon. The personal statement I had to write. Going home. Plans for the weekend. My violin lesson after school. My mind was everywhere – it felt like I was in a constant traffic jam of my own thoughts – annoying and frustrating.
I was a somewhat chaotic, anxious and distant teenager, deep in thought a lot of the time, and always trying to fight for what I believed was right. I constantly felt like I was going into battle, despite being a peace loving hippy and a battle field was the last place I wanted to be. I couldn’t articulate how deeply unhappy I felt about the world I was in and trying to fit into, or find my place at the table. Many things didn’t make sense to me, the bullying, being taken out of my favourite lessons to go to the SEN department, the constant assumptions by teachers, being laughed at for being me, and when I was much younger people at school shouting I’ve got the “Alice disease” and making me believe that there was something very very wrong with me. Instead of articulating my pain, I became confrontational when I turned into a teenager, and would often argue with teachers, fighting to have my needs met, writing endless letters to the headteacher about the latest thing that made me angry about school and trying to do everything I could to actually get people to listen to me, I always laugh when I remember the time I told the school SENCO in front of several teachers and my parents during an annual review that “I can speak for myself”, when she asked me if I wanted a named person to “fight my corner.” They were all amused, but I was not wrong, there were moments I had to fight for support or just someone to listen to me, and I was more than capable of doing so. And it’s sad looking back that as a special educational needs young person (I hate that phrase, my needs were absolutely not ‘special’) that it was expected I would at some point need to go into battle, and there was even a space on a form to record it. Having to fight for something should never be the expected norm. If it is, there is something drastically wrong with the system.
‘Things will fall into place when I leave school,’ I thought. I assumed that on leaving school I would suddenly feel like a ‘proper’ adult. And people would finally take me seriously. Like a real woman with it all together, able to multi task, look after herself, have a social life and work towards a career. No idea why I dreamt about this so much, for it all to make sense, for my brain to make sense. I already knew I was dyspraxic, I understood I was different, I just didn’t know there would be more to my story.
When the pandemic hit, I thought I was finally in control and working out what a ‘real’ adult looks like. I’d just started my first full time job as a youth worker in an office at the age of 30, after years bouncing around in education collecting degrees and insecure temporary jobs with very little progression or recognition, I was very proud of my new job. I told everyone about my desk. My colleagues. The young people I worked with. The first few months I was in that office, I found that I had to concentrate more to get things done than other people seemed to, and in the evenings after the commute home I was exhausted. Around this time I also took up running, which turned out to be a great way to channel my chaotic thoughts. Loads of people work full time and commute, I told myself. I didn’t even have to look after a family, why couldn’t I look after myself? At work my desk buddy would complain about me being up and down a lot, I couldn’t sit still and was probably a nightmare to sit next to. Especially when she was on the phone. She was nice about it, and we had a laugh, but I still wished I wasn’t like this. When I was out of the office and working with young people I was in my element, my then undiagnosed ADHD was an asset in youth work, I could be daft and as outwardly restless as I wanted. Once I’d forgotten to buy bread for sandwiches, I had everything else to go in the sandwiches but not the bread, the young people found this hilarious as I laid out an array of sandwich fillings across the table. I did pop across the road to ASDA so they didn’t go without lunch, but they never let me live that one down. When I left that job one of them said “There’s only one Alice. We’re never going to get an Alice like you again,” which is moving but also made me so proud. That I could have that much impact on a group of teenagers who I absolutely adored.
As the pandemic progressed, and my world suddenly became even more uncertain, the wheels began to fall off my already unsteady double decker bus. I eventually sought an ADHD diagnosis from a private psychiatrist because the NHS waiting list is three years, I couldn’t put everything on hold for three years. After my virtual assessment where he asked me a lot of questions about my history, my functioning at home and work, and the challenges I have faced, he confirmed that I most definitely have inattentive ADHD. A diagnosis affecting 3 – 4% of adults in the UK population. Getting diagnosed at the age of 31 made me understand my life better than I had been able to before, my relationships with family, friendships, the way I process difficult or traumatic events, battles at school and eventually work. I could answer some of the why questions now.
Around this time I also began to see a very good, but also expensive neurodivergent aware therapist who I was fortunate to get funded through Access to Work. She helped me to unpack a lot of what I now recognise as childhood trauma that I had tried to make disappear was intrinsically linked to my neurodiversity. As I slowly began to put pieces of the jigsaw together, I started to understand the world I had grown up in. And how my undiagnosed and untreated ADHD related to this. Trauma is something I’ve learned is very common amongst my new found ADHD tribe, I say “new” although a lot of people I knew when I was younger and more recently have either suspected or newly diagnosed ADHD too. And overwhelmingly many are women. In recent years more women seem to be getting diagnosed with ADHD who were missed as children, often because we didn’t present as the stereotypically ADHD child, and in the 80’s and 90’s teachers just weren’t looking out for us. We’re finally now being recognised as having a neurodevelopmental condition and not being put down as ‘anxious or hormonal.’ ADHD is not a new thing, it’s always been here – people are just talking about the none hyperactive eight year old boy running around the classroom presentation more. When I described horrendous symptoms of PMS to a doctor once I was told that I was, “just hormonal.” Being taken seriously in a health care system built for and designed by men is a battle in itself. I have also gone to the doctors countless times with now what I recognise as symptoms of ADHD to be fobbed of with “it’s anxiety” and a prescription for antidepressants and advice to join the waiting list for NHS talking therapies. Citalopram doesn’t treat ADHD symptoms or the dopamine deficiency that I now know my brain has always had. If anything it just made me care less about things.
ADHD is characterised by either being hyperactive, inattentive or a combination of the two. It includes impulsivity, difficulty maintaining focus or channeling attention, executive functions like time management, organisation or remembering instructions, and then there’s hyperfocus – being so engrossed in something we enjoy and not being able to do anything else or switch attention. ADHD can also affect us emotionally too, and especially as women our ADHD is very much impacted by hormones at different times of the month, an area that is still underresearched. Sometimes I can really be on it, and know exactly what I’m doing, other times I just feel like a confusing jumble of words. Rejection Sensitive Dysphoria (or RSD) despite not being is the DSM5 diagnostic criteria, is still reported by a lot of people with ADHD. RSD is basically extreme or intense reactions to rejection or perceived rejection, and can be incredibly debilitating when it does strike. Women are more likely to be diagnosed later in life, partly because we’re not picked up as the naughty kid, but also as girls find ways to hide their difficulties and fit in with their peers. In my my case neurdiversity was picked up as a child, they diagnosed dyspraxia when I was 7 but even then conversations were around my physical difficulties; coordination, appearing clumsy, fine and gross motor skills. There was little attention paid to working memory, organisation and executive functions. The difficulties associated with inattentive ADHD often become more apparent as we get older, when parents don’t do everything for you. Your parents don’t make you a packed lunch everyday anymore and you are expected to get yourself to university or work on time.
When I was diagnosed my psychiatrist told me that my brain has a deficiency of norepinephrine, the neurotransmitter that is linked to dopamine. As a result the pathways or wiring that sends messages through these neurotransmitters to my brain doesn’t function as other people’s do. Meaning that something that comes easy to you, can feel like climbing a mountain to me. ADHD brains have a lack of dopamine, the feel good chemical we all need to function or get stuff done. When we go for a run or listen to music or dance, our brain releases dopamine and my brain doesn’t produce enough of it. This is also why running or exercise is great for ADHD as it helps produce the dopamine we need. I also learned that a lot of people with ADHD respond positively to stimulant medications as they reset the neurotransmitters to give us the dopamine our brain doesn’t naturally produce on it’s own. This can improve executive functioning skills including focus, attention, time management and organisation.
ADHD Treatment
Following my diagnosis in November 2020 I put off starting new medication for a few months until I had trained for a half marathon. Half marathon over I was ready to see what it felt like to be medicated for my ADHD for the first time. I was prescribed Elvanse, a stimulant that has made a drastic improvement to my life. I was scared at the beginning, as I’m sure most people are about taking medication that could either be the best thing ever or not so brill depending on how your body reacts and metabolises it. Happily I was the former. The treatment helped with focus, attention, organising my day and the million thoughts an hour that my brain was occupied with. I was suddenly able to concentrate in meetings, meet deadlines and not feel so exhausted at the end of the day. Anxiety seemed to almost disappear and as a chronic insomniac, I was finally able to get a good nights sleep. It worked like I heard people with positive stories of Elvanse describe. There were no side effects. I felt calmer and the noise in my brain stopped shouting at me. I was able to focus on my work, feel more productive and organise myself in a way I have never been able to do before.
I continued with my treatment plan and had regular reviews with my psychiatrist to ensure I was on the right dose, and the medication was having a desired effect. Through keeping a detailed titration diary it was clear the medication was working. I was finally stable in January 2021, just over three months after I had started titrating on this new medication. I felt positive and that this was finally the start of a new life I thought would never exist. Following a period of being stable on medication when diagnosed privately, the usual process is for a psychiatrist to write to GP’s to request a shared care agreement, this means I would be able to get my medication on the NHS rather than expensive private prescriptions that are unsustainable long term. A GP takes over the prescribing whilst still remaining with the specialist psychiatrist for 6 monthly reviews. My psychiatrist wrote to my GP surgery to request shared care.
Sounds straightforward written like that, doesn’t it? This is where the battle began…
Going into Battle
At first my GP surgery didn’t respond to my psychiatrists letter, I had to chase them up to be told over the phone that they won’t agree to a shared care agreement but they couldn’t tell me clearly why. During various phone calls with pharmacists and practice managers, and one face to face appointment with a doctor over the last ten months I have been told: I need an NHS diagnosis, they questioned my psychiatrists qualifications and if he was “legitimate” and mentioned that I can’t expect them to prescribe “heavy duty drugs”. They were concerned about “continuity of care” if something happens to my psychiatrist. Whilst maintaining that it is a CCG policy. I was continually discriminated because I have a private diagnosis and they refused to provide treatment and care I should be entitled to on the NHS. And failed to give me an acceptable reason why.
I took my case to the CCG and MP. The CCG told me in a response to my complaint that they can’t direct individual GP’s and deciding to enter into shared care agreements was down to practices discretion. My GP still maintained they were being directed by the CCG, who told me me the opposite. It felt like an argument between two school children who were blaming each each other, “No they done it.” “No it was her.” Except this wasn’t a playground dispute that can be resolved by hugging it out and making up. It was already having negative consequences to my mental health. I was exhausted. I didn’t think I would ever get any answers. I ranted to understanding friends and to Twitter whenever I got a chance, and tried to push through. During this time I was also going through two bereavements and was in the process of changing jobs following a redundancy. There was a lot going on, I put dealing with everything as well as I did partly down to medication, alongside having incredibly supportive friends.
I wrote another letter of complaint, this time to my GP, asking them to put in writing exactly why they believed it was unsafe to prescribe me Elvanse, quoting the cost of living crisis and outlining the detrimental affects denying the medication we need to function can have on adults with ADHD. They took a while to reply. They told me they had to have several meetings about complex issues. I waited.
This week they wrote to me to say they will AGREE to shared care with the term that I attend my six monthly reviews with my specialist. Attending reviews is a condition of all shared care agreements, so highlighting this is bizarre. I assume they want to hold onto some kind of power and control.
I have shared care because I fought, and was able to fight for what I know I should be entitled to. Many people are not able to go into battle. ADHD if left untreated can cause more consequences on the NHS long term, and a boomerang effect of accessing mental health services. ADHD is often linked to substance misuse disorders, imprisonment, unemployment and educational underachievement. It is estimated that around 1 in 4 prisoners in UK prisons meet the diagnostic criteria for ADHD and many adults with ADHD are at higher risk of entering secondary mental health services, with one if four woman with ADHD more likely to have attempted suicide than those without.
This victory to get shared care feels like I have achieved something amazing, won a competition or completed a degree, people are sending me Prosecco and chocolates to mark the occasion. It’s lovely but it really shouldn’t be a celebratory event. We don’t send people being treated for heart conditions or diabetes congratulations cards, it is just expected that they are able to receive their treatment with minimal battles. ADHD is massively misunderstood within the medical profession. During this on going saga a GP told me he phoned and didn’t leave a message because “given my diagnosis of ADHD lengthy written replies would be overwhelming for me.” I haven’t yet found the energy to tell him that actually I deal with words for a living, and his assumptions are miles away off the mark because many of us ADHDers are very confident and capable writers.
The last ten months have taught me:
- There isn’t any valid reason why a GP Surgery should deny a shared care agreement
- I only got shared care because I was able to fight
- Many people across the country are being failed by the system
- Professionals (Doctors, GP practices, Clinical Commissioning Groups) need to talk to each other. There needs to be some joint up thinking nationally about how to best support the growing number of adults seeking ADHD diagnosis within the NHS.
- GP training should include how ADHD affects women, the often late diagnosed inattentive presentations and the benefits of ADHD medication. Rather than fear about side affects and treating prescribed stimulants like street drugs.
I don’t have the answers to any of these points, but with the support of my MP I hope to highlight the flaws in the system, so people getting diagnosed in the future don’t have to fight for ten months to get the medication they need.
I am over the moon to finally get shared care agreed, and sad knowing my story is not uncommon. Women are now spending time reframing their life with a new diagnosis in tow, and how knowing they have ADHD can help in a chaotic and uncertain world. We’ve worked on ourselves through therapy, education, medication and writing about it. We’ve connected with others, and shared our stories. So now it’s time for the NHS and medical profession to reframe how they respond to the treatment of a growing number of adults with a late diagnosis of ADHD. We’ve done all of the hard work in getting us to where we are today, more than you will ever understand. Now it’s up to those with the power to change the system to do the rest.
ADHD medication, treatment and support is not just life changing, but life affirming.
A Little More Understanding 