I cried today when I heard Alfie Evans had died.
I admired his parents, his father Tom  though he was in unbearable pain he emerged as an articulate knowledgeable man who handled the system in a cool and professional way.
I don’t see the NHS through rose coloured glasses we all know of the abuse and deaths that are covered up.
There are a lot of over bloated egos in the NHS and unfortunately, I came across them when the Mainman was being treated at the special dental unit Liverpool Royal Hospital.
The last appointment the Mainman had was December 2017 – he was kept waiting in a crowded noisy waiting room – he became upset – the consultant advised me to ‘stay in your car until we’re ready for you’
The Mainman had his teeth cleaned and polish under sedation.
I emailed to confirm the next appointment I received the below email.
Dear Mrs O’Keefe,
Apologies for the delay in responding to your email. The appointment date we had scheduled for Peter, 22nd March, cannot be confirmed today due to a revision of the list for treatment. We are in the process of rearranging this and will inform you of the new date in writing early next week.
They didn’t send me a new appointment but they did send me a Solicitors letter which read: Because of the Mainman became anxious at the last appointment we have put down the following rules.
- The Mainman will be picked up in a car with two security personnel and brought to the hospital they will remain with him the whole time even when receiving treatment – he will be returned to his home by the security personnel. There were a lot of stipulations in a two-page bullying letter.
A few weeks later I received a telephone call from Liverpool Social Services – they also received a solicitor’s letter from NHS Special Dental Unit legal team saying in their opinion [the trust] feel I needed support – LCC said they would not take action and the letter was ignored.
The Solicitors letter I received was horrendous and very disturbing. In my years of politics/disability campaigning, I have never received or read such a bullying letter, it is in breach of all disability laws and human rights it’s like going back to the dark ages of the 50/60.
To send a Solicitors letter tells me just how Liverpool NHS are removed from the world of Autism.
The only word I can use to explain why they wanted to exclude me from my son’s appointments is tyranny being cruel and oppressive towards my son and me – they don’t give any explanation as to why they want me excluded. The solicitor’s letter was cruel, unreasonable, and an arbitrary use of power and control……. and without consultation.
The experience the Mainman would have to go through to gain treatment [clean & polish] would outweigh any benefits – to be collected by two strangers taken away by transport without me his mother who he spends all his time with would be too much for him to bare – this would impact on his PTSD and heighten his Autism – the NHS deals with all different members of the public no two people are the same but their response to my son is to send a solicitors letter because they don’t know how to deal with Autism
5 years – half decade to fit one tooth due to poor dentistry all 18 surgeries failed.
The Mainman has been cool when attending the Unit – this was the first time he became anxious due to no fault of his own – his Autism was not honoured.
I asked an FOI as to what training the staff had received in Autism.
The NHS is like the curate’s egg good in parts – there are a lot of bloated egos – the special dental unit should have less ego’s more compassion.
Professor Youngson operated on my son [the 19th op] for 4 hours fixing his mouth and I thank him for that.
This tells you of the state of care for our Adult Autistic kids in the NHS.