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Hazel Griffiths a retired Nurse talks ‘All things Autism’ and medication – interviewed by Anna Kennedy at Women’s Radio

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Anna Kennedy OBE’s guest for this week on ‘All things Autism’ is Hazel Griffiths from Harrogate, which will be aired at 1pm and 1am each day this week on  www.womensradiostation.com.

Anna met Hazel and her lovely son Mark over 10 years ago.

This is Hazel’s story:

I’m Hazel and I have two boys. I’m a carer for my autistic son, my other son is a carer too but he doesn’t see himself as a carer, although he is, he looks out for his brother.

I am also a national and international speaker and campaigner. A retired ED nurse, an advisor to NHSE STOMP, independent MHA review, CQC restrictive practice and seclusion and lots of other hats, I wear. It will become clear, why I became involved in all of these…

STOMP was  launched in 2016, and is mainly for autistic adults, and/or  learning disability, their families and professionals. It stands for stopping over medication with psychotropic medicines.

Sadly, more and more evidence was emerging around children and we  launched STAMP in 2018 which is specifically, for autistic children and young people, and/or learning disability, their families and professionals. It stands for supporting treatment and appropriate medication in paediatrics.

STOMP and STAMP are part of the NHS Long Term Plan

I co produce and deliver face to face autism, STOMP, reasonable adjustments, Human Rights, Physical Health, patient safety,  carers awareness training to professionals across all job grades, i campaign to have STOMP in all autism training.

I am involved in developing clinical link pathways, to provide vital resources and tools, for professionals, to follow on from face to face training and STOMP is included. All of my work is to reduce unacceptable health inequalities and unsafe care and stop what happened to my son.

I believe half a day autism training is not enough for professionals and their need extra resources. I advocate for autistic people to be involved in training professionals. I also pushed for autism  to be removed from MHA, autism is not a mental illness, a learning disability or challenging behavior,  it’s neuro developmental.

It is possible for someone on the autistic spectrum to meet the criteria in the Act for detention without having a mental disorder, keeping autism in the MHA perpetuates un-transformed care, inappropriate sectioning and ove reliance on psychotropic medicines and Restrictive practice.

In May 2011, issues with psychiatric treatment given to people with autism and /or LD became an area of major public and political concern following a panorama programme, showing criminal, physical and emotional abuse of people with autism and learning disability.

Following this In 2012 DHSC launched an enquiry into the care of people with autism. Amongst many of their findings they found  deep concerns around overprescribing, and in response to this then NHS chief pharmacy commissioned a number of studies and one found that 30-35 thousand people with autism and or LD were taking psychotropic medicines in absence of the condition they were indicated for.

Following this study the then minister of state, and advice from the chief pharmacist and clinical leaders, initiated  a call for action and the STOMP program was launched in 2016.

The main aim of the NHS England STOMP is to support the safe and appropriate use of anti psychotic medicines. Additional aims are to reduce over-prescribing, raise awareness, gather a range of partners, royal colleges to sign up to our health and social care pledges who agree to produce action plans to embed and promote stomp principles in their organisation.

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I became involved with STOMP after my own sons experience and hearing some awful  experiences from other families.I decided to work from within and draw upon my nursing knowledge to try and change the culture and my tactic was to put my energy in  groundswell, get nurses front-line staff to also speak up, because not all feel psychologically safe to do so, our health system is very hierarchical an some staff still feel wary to speak up despite speak up guardians and duty of candor.

My son went to mainstream school and had a group of friends that looked out for him involved him in things they saw my sons strengths focused on what he could do not what he couldn’t do. He was never bullied. 

My son is kind, gentle, non judgemental, a breath of fresh air. He stims but suppressed these in fear of not looking cool, he wanted to go to school but struggled with unwritten rules social etiquette cues non autistic people know instinctively.He would be  socially fatigued, information and sensory overloaded by the time he came home from school.

When my son left school and was living away from his family, his home and his friends and he had an acute reaction stress and was prescribed psychotropic medications. Living away from home he struggled with the transition into adulthood, where the rules and expectations change.

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He was assessed by the local Health team and without a definitive diagnosis,? negative symptomatic of psychosis. He was given psychotropic medications.

We became increasingly concerned around some of the side effects, rapid weight gain, increased LFT, BG, emotional bluntness, catatonic and movement difficulties.

I felt the team were not listening to his families concerns around his care, support and treatment. As a nurse, I was shocked at the way my son was been treated. And this was around the time I first met Anna and came to her for help when no-one wanted to listen, it will be about 10 years ago when my son was placed in a private ATU 200 miles away from his home and unlawfully detained.

He received some compensation nothing life changing.

I’m pleased to say my son has been discharged from his health team and has been for many many years. He is not on any medication and once his GP stopped all the medications, his blood results and weight returned to normal levels. I have huge concerns around Mental Health services and the way they view autistic people, many end up with wrong diagnosis.

So, my GP  looks after my son  now thankfully, she carries out an AHC and GP used to carries out a medication review at the same time.
His Gp devised a health care plan, so, any future professional, knows what’s normal for my son, stimming, self regulating, etc and the plan states clearly, exactly how to support my  son, my son also  has  Catatonia.

Catatonia, is now believed to be a late complication of autism and treating it as so has eliminated my sons catatonic symptoms.  I cannot tell you how heartbreaking it was to see my son catatonic, in its extreme form, we saw absence of speech/movement , difficulty initiating  and completing tasks.

The family sought external expert opinion, Amitta Shah and found by following wing and shah non medical (APT) active, prompt approach this involves more active stimulation and less passive stimulation, sticking someone in front of the TV all day is not care or helpful.

The approach requires you to give verbal, physical prompts or do the task for him, if it’s the latter it’s important not give him a hard time, in fact the latter becomes less frequent when you have the right environment.

Some families are OK at the moment supporting their loved ones, but some want to future proof services to see what would happen if they were not around anymore. I haven’t time to really touch on carers, but, you know a huge worry is what will happen to my son when his parents are no longer here.

He has already seen the worst of our care system, so I try and stay resilient , I have to bounce back quickly, look after my own health, peer support, and Anna you have been inspirational chivied me along on days I feel less strong you come on social media with energetic ideas to promote a positive narrative and events for autistic people, giving me hope.

I would like to stress that I am not anti medication, as a nurse I know how beneficial medications can be and STOMP is not an anti-medication campaign. What we do ask is for prescribes use medications wisely and for the right reasons, monitor, review, remove if side effects outweigh the benefits or not making a difference in an mutually agreed time frame, shared decision making on which medications they prefer or alternative  interventions.

I  cannot get involved in individual cases around care, treatment and the over-prescribing of distress. So, I refer families to our STOMP online resources, found here www.england.nhs.uk/Stomp, and encourage them to keep their own monitoring medication booklet and have put together set of 8 questions for them to ask their prescribes, as follows:

As a nurse and mum I am concerned around the many scandals we have, southern health and death of Connor sparrowhawk, Whorlton Hall  mid staff, Gosport hospital.

Two recent scandal reports, Shropshire Maternity i deaths and Baroness Cumberlege, Independent Medicines and Medical Devices Safety Review into three medical interventions: the epilepsy medication, sodium valproate; the hormone pregnancy test  and pelvic mesh implants, both make uncomfortable reading as a nurse, because what is going wrong, why are these happening.

It’s in our governments gift to stop unsafe care and CQC need to move away from tick box compliance inspections and commissioners should be regulated but would need change in legislation for this.

STOMP  has giving me an opportunity to drive change, I just wanted to be my sons mum but ended been his advocate and go on to campaign to stop unacceptable care and treatment. I have pushed for STOMP  to be included in the  CQC inspection framework, and ask STOMP related questions. In addition, I have pushed for  STOMP to be included in the the independent MHA review, code of practice. We have accountability.

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