I have always been different, no matter how hard I tried to fit in.
When I went on holiday with a friend to Vietnam and Cambodia, I realised something was interfering with the trip. For some reason I found it really hard to organise myself and to avoid forgetting things. What was wrong with me?
At 14 I had the maths age of an 11 year old and the verbal reasoning score of a 16 year old. Maths was boring, so I just didn’t pay attention and doodled or daydreamed instead. The educational psychology assessment meant that I did not have to do Design and Technology GCSE. Before I was exempt I nearly broke a sewing machine needle when I got distracted, and made muffins without dough (inedible) as I couldn’t follow the steps without getting distracted.
I tried to do a nursing degree, but it took me an extra week than it should have to learn leg bandaging, after seeing two different techniques. After this I was diagnosed with a “non-specific learning difficulty.”
I got distracted during the assessment by a noise in the waiting room, and felt maybe I hadn’t performed well because of that. I got withdrawn from the nursing degree as I was “not consistent and competent enough”. This was just after I had seen a disability assistant, who said that with strategies I could learn what I needed to. The Royal College of Nursing said I had suffered discrimination and were willing to take the case further, but I realised that I could not learn the practical skills and was unsure why. I was not stupid, so why had I been trailing behind my course mates? As my personal tutor had suggested I had autism, like her son, I went to the GP.
I got referred. Back in 2018, the NHS wait was a mere six months. It’s now four years.
The consultant psychologist asked me to tell her about my life for an hour. She then said “I wouldn’t worry, most of my patients with ADHD [Attention Deficit Hyperactivity Disorder] struggle to have relationships and hold down a job, so you’re doing well.” She signposted me to a local support group. I apparently did not have ADHD badly enough for a diagnosis. I also did not have autism.
I went to the group, and for the first time, I sat in a room full of people where I felt I was on the same wavelength and I could understand them. We talked fast, we had lots of ideas, we were emotional, we were interesting. Here, for the first time, I fit in. They spoke of being let down by the NHS and their struggles firstly to get assessed and then to get medication and to get changes to this. They spoke of mistakes and failures in their lives that they felt had been caused directly or indirectly through ADHD, and they sought help in managing the chaos.
ADHD continued to affect me, but I did not do much research, as I reassured myself that the NHS had told me I did not have it badly. It was a spectrum and I was at the mild end of it, so I was fine. My boyfriend and friends disagreed. I had gone from my mum organising things for me and finding lost property to my boyfriend doing that. I was so frustrated – why couldn’t I do this like most of the people I knew? What was wrong with me, and what on earth could I do about it?
After some research, I realised that I had not been adequately assessed on my life before the age of 12. This meant that I could not have been diagnosed with it, as you had to have it before then. I asked the GP for a reassessment, explaining how it affected me on a daily basis. However, weeks later, they informed me that the reassessment request had been declined due to insufficient evidence of ADHD. I was so frustrated, upset and angry. So I just had to keep struggling? I was fed up of being distracted, emotional and forgetting things.
I could not afford a private assessment and I was lucky that my boyfriend could. He shelled out £1200 and within weeks I had an appointment with a psychiatrist. There were no private appointments in my city, so we had to travel to a city nearby.
Before the appointment, my mum and my boyfriend completed a questionnaire and I was asked to bring school reports. “Your boyfriend scored you 9/9” the psychiatrist explained, “and your mum scored you 4/9 for your childhood, which is one below the threshold for diagnosis. However, it is possible that your parents compensated for any difficulties during that time, and so they might not have been as noticeable. Have you brought your school reports?”. She read through every single one up to the age of 12, nodding and making notes.
“There’s enough here for me to score you 5/9 for your childhood”.
She then asked me about my life and how ADHD affected me. At the end of the appointment she confirmed that I had it, and I proudly announced it to my boyfriend in the waiting room. We had finally come to the end of the assessment journey.
I feel that I have been let down by the NHS and as a result I have had years more of difficulty due to a flawed assessment.
The BBC Panorama programme on ADHD has received 1800 complaints and counting. A reporter who was told by an NHS psychiatrist that he did not have it went to three private clinics, where he was assessed by a pharmacist, a trainee nurse with a supervisor, and a psychologist, who was more interested in playing with her hair. In my opinion only a psychiatrist should be able to diagnose patients. Unfortunately due to staffing, the NHS as well as private clinics have trained up psychologists, nurses and pharmacists to deliver the assessments, and from what I saw on the programme, they were not of good quality. The clinicians were asking leading questions. But the reporter was also answering as if he had ADHD.
I’m glad that I got assessed by a psychiatrist and that the process was thorough. I feel sorry for those who have shelled out and have been let down. I also feel bad for those who, like me, were let down by the NHS. I am also disappointed that patients are not offered CBT therapy for ADHD, to help them manage things such as emotional dysregulation. All diagnoses should come with support for patients to understand the condition, how it affects them, to come to terms with it, and to work out how to mitigate it. It is not simply enough to say right lets put you on medication.
The reporter’s programme and article was unbalanced – it only included how the private clinics had got it wrong. The NHS psychiatrist on the programme then wrote a more balanced article for The Guardian where he explained that many NHS patients had resorted to private assessments due to waiting lists, and that there were undoubtedly many sound diagnoses from the private system.
The problem is that the BBC article and programme discredited the private system to the effect that two family members and a friend have now suggested I don’t have it. What’s ironic is that they’ve all seen the impact it has on my life, and theirs, as they reunite me with items left at theirs, or put a “phone, keys, wallet” post-it on the door…
Thieving “carers”
Firstly, apologies that I haven’t written for a while – my creative energies are currently being directed towards a novel I’m writing. It’ll take several years to complete but I will let you know if it gets published.
From 2012-2013 there were just under a million cases of personal property theft according to the British Crime Survey. Yesterday I saw CCTV footage of a stealing personal assistant in the news and it upset me. It was even worse that the victim had only just come out of hospital. Sadly when I searched for the topic “CCTV stealing carer” many videos came up, including someone caught red handed and the mobile phone footage of the parent. Both ladies I’ve worked for have been victims of this crime. Unless the amounts are large, compensation is the most common outcome. However I think a jail sentence is necessary to teach them a lesson. This was given to a carer who stole £35,000 over four years from a couple.
They make an example out of cannabis growers, why shouldn’t they make an example out of those who steal from the people they are supposed to help? However, the criminals will not be able to work in the care industry and will probably struggle to get a job now, which is something. This is why if you think it is happening to you you must get video evidence and report it. Don’t leave them with a blank Criminal Records Bureau check so they can target someone else. The psychological scars it causes can be long-lasting.
Sadly it is difficult to stop this from happening – to scratch beneath the surface of someone at interview and see whether they have a good conscience. I wonder what makes these people feel entitled to stealing money from those who need it most. Some have suggested that if carers were paid more this might not happen. But I don’t think this is the case. It’s not desperation that leads these people to steal, it’s something that psychologists term “neutralisation” – thieves override their conscience with a justification that neutralises the guilt. In a 1984 study of American shoplifters researchers found that this was how they justified their criminal activity:
– If I am careful and smart, I will not get caught.
– Even if I do get caught, I will not be turned in and prosecuted.
– Even if I am prosecuted, the punishment will not be severe. – (when compensation is all that is ordered, I expect this is a motivation)
– The merchants deserve what they get.
– Everybody, at some time or another, has shoplifted; therefore it’s ok for me to do it.
– Shoplifting is not a major crime.
– I must have the item I want to shoplift or if I want it, I should have it.
– It is okay to shoplift because the merchants expect it.
The carer may have taken £20 per week rather than the whole amount in her employer’s purse because she thought that in small amounts it would not be spotted. The thieves obviously see those who they care for as soft targets. Perhaps she was also greedy – the Chanel handbag on the thief’s arm as she walked out of court seemed to suggest that. When I worked as a legal secretary we advised a girl who had stolen from her parents. She showed no remorse and merely worried what the sentence would be. Both the lady who stole £35,000 and this girl bought luxury items with the proceeds, leading one to think that, again, self-indulgence is a strong motivation.
My moral conscience is secure. I would never think that stealing was acceptable. When I looked after an elderly lady I was shocked to hear about her experiences. She was naturally very distrustful of anyone new and was worried whenever I had to run errands in her bedroom without her there. She had been the victim of hoax callers pretending to check her television was working who then stole from her. She had also been the victim of a carer who had stolen things while in her bedroom. When she was in hospital she had her wedding ring taken. She had resorted to carrying a pouch around her wrist with her valuables in and when she went into hospital she wouldn’t let anyone take it off her. She wouldn’t let me have a front door key, so when her door jammed and she couldn’t get out of her bedroom, I had to ring her son, frightened that something had happened to her during the night.
I dread to think of the care I will receive if I ever have to have home help, after hearing what she continuously went through. I asked her why she didn’t report it and she said she had no evidence and didn’t want to cause trouble. This was of course the reason that Lynette Nardone had to pay £1,000 for a CCTV security system as she didn’t feel safe in her own home. A CRB check won’t necessarily help either – whilst they do deter those that have been caught, they will not stop those who have escaped the law or first-time opportunists.
Shopping Errands – Preventing Access To Your Cash
Must we all have CCTV fitted in our homes? If you do have home help I would recommend doing this if a carer has to do shopping for you:
– tell them you will pay them afterwards and make it clear that you will only pay them back if they show the receipt. If they have a contract try and make sure there is a clause covering this in it or get them to sign a statement to this effect if possible
– ask for their bank details so you can make a transfer online when they are away
or if this is not possible:
– have some money ready
– ask to see the receipt
– ask them to leave the room and shut the door while you get the money out
Unfortunately it is impossible to tell who you can trust and who you can’t. It took many months for my employer to trust me after what she had been through. It is probably best to assume the worst.
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Filed under Advice, Life of Lydia, News Comment
Tagged as advice, assistance, carer, cash, CCTV, conscience, crime, home, home help, house, ill, justification, money, money handling, moral, morality, Nadia Summers, neutralisation, patient, psychology, shoplifting, steal, stealing, theft, victim, vulnerable