All Things Autism - Hazel Griffiths, NHS England Stomp & Stamp.mp3 ========================================= Speaker 3 00:00 - 00:41 Hello this is Anna Kennedy we're talking all things autism and it's a wet wet wet day to day. Yeah we're still obviously in the midst of Covid and lots of different things happening so just to remind everyone don't forget that if you have a son or a daughter on the autumn spectrum they can get an exempt card. There was lots of information happening over the last weekend about the official face mask exemption card issued to prevent people with disabilities from being abused The government have issued this mask exemption card so that people can wear them to show that they do not need to cover up in stores. Speaker 3 00:41 - 01:15 I've actually bought Angelo one that put on the end of a lanyard but you can actually download an exemption card template and if you go on the government website or if you look on my Facebook page if you follow me or Twitter I've shared it there so just download it and you can view it on your phone so you can carry it around with you. I just also wanted to remind you about the Create Art competition And you can enter 2D, 3D, digital photography or prose or poetry. The closing date is going to be the end of August. Speaker 3 01:15 - 01:37 So again, if you check on the charity website, check out the Create Art competition. It's not that we are the basically people who are sharing it. I'm just one of the judges. and I've been a judge now for quite a few years and there's some fantastic artwork and one particular year we had 1,000 pieces that came through and so amazing. Speaker 3 01:38 - 02:10 Again don't forget check out our charity website for the resources page if there's anything that you feel that we should have on there please send us in some information through the contact form and we'll make sure that we put it up on the charity website. If you want to be one of my speakers on Women's Radio Station, please contact Lisa, lisa.robbins at anacanadyonline.com and we can slot you in our timetable. And also, I just wanted to share with you, we had our AKO Expo. One of our speakers was amazing. Speaker 3 02:10 - 02:27 Well, they're all amazing. But Laurie Morgan, she has written a book called Travelling by Train, The Journey of an Autistic Mother. So behind clinical approaches to autism are real human beings with real lives. This is just one of them written by an autistic parent. Speaker 3 02:27 - 02:39 This book looks at the situation they faced when playing a game. where nobody told them the rules. So what would you do when faced with such circumstances? What would you do to fight the system that assumes guilt until innocence can be proven? Speaker 3 02:40 - 03:03 How would you fight for your children's right to a family life when your truth to your life is simply tell the truth? This is a story of resilience, determination in the face of great odds driven by a mother's love for her children. It's called Travelling by Train and available on Amazon. So my guest today knows all about the story of resilience, determination and facing great odds. Speaker 3 03:04 - 03:13 It's Hazel Griffiths and she's a carer of her autistic son. and a retired emergency department nurse. Hello, Hazel, how are you? Speaker 2 03:13 - 03:37 Hello, Anna, thank you for inviting me. Yeah, I have two boys and I'm, as you said, a carer for my son who's autistic, and my other son, he's also a carer too, but he doesn't see himself as a carer, although he is, and he looks out for his brother and helping him access a very confusing mass of sights and sounds in an overwhelming, unpredictable world we live in. Speaker 3 03:37 - 03:40 Yeah. How old are they? Speaker 2 03:40 - 03:42 Matthew. Yeah. Yeah. Speaker 3 03:42 - 03:44 How old are they both? How old are your boys now? Speaker 2 03:45 - 03:49 Oh, Mark is 36 and Matthew's 34. Speaker 3 03:52 - 03:54 When did we meet? How long ago was it? Speaker 2 03:55 - 03:57 Oh, 10, 11 years ago. Speaker 3 03:57 - 03:59 Was it that long? Blimey. Speaker 2 03:59 - 04:00 I know. Speaker 3 04:01 - 04:03 So you used to live in Harrogate? Speaker 2 04:04 - 04:05 We do. Yeah. Speaker 3 04:05 - 04:06 Yeah. Okay. And how long have you lived there? Speaker 2 04:07 - 04:11 Oh 28 years. Speaker 3 04:11 - 04:24 Okay so if people are listening in obviously you're a carer and you're a retired emergency department nurse but if somebody says who is Hazel just tell me a little bit more about yourself your likes your dislikes. Speaker 2 04:27 - 05:05 Well it's difficult because once you become a carer you kind of lose yourself a little bit so that's a hard one because I do like traveling and going out walking and doing lots of things, embroidery and things that I find that help me relax. But when you're a carer, they kind of put on a back burner a little bit. So I think the reason I'm involved in a lot of campaigns now because of what happened to my son and one of the main ones is the stomp, the stop over medicating people with autism and learned disabilities with psychotropic medicines which I have come on to talk to you about today. Speaker 3 05:05 - 05:19 So tell me a little bit more about STUMP because some people obviously listening in might not never have heard of it so for someone who's like just starting at the beginning just can you just explain a little bit about it and how it came about? Speaker 2 05:19 - 06:26 Yeah well STOMP was launched in 2016 and it's mainly for autistic adults and or learning disability and their families and professionals and it stands for like I said stopping over medication with psychotropic medicines but then sadly more and more evidence was emerging around children and we launched STAMP which stands for Supporting Treatment and Appropriate Medication in Paediatrics and this was launched in 2018 which is specifically for children and young people and STOMP and STAMP now are in the NHS 10-year long-term plan but I co-deliver autism training and in that I include STOMP as well because I think it's really important and I don't think half a day training is enough and we train all job grades across all job grades and we develop a clinical link pathway as well so that the professionals have resources and tools to follow on after the training and we involve the Mental Health Act as well and reasonable adjustments in human rights and physical health. Speaker 2 06:26 - 06:27 We try and cover lots of things. Speaker 3 06:27 - 06:29 So all of that in half a day? Speaker 2 06:29 - 07:03 in half a day but that's why we do the clinical link pathway so that when they go to their computer they can download this clinical link pathway and it has all the legislations on the Autism Act, the Human Rights Act, the Housing Act and it also has different interventions and who are the key players in autism as well. So that helps them because sometimes if there's a professional that's an advanced practitioner or something or is not on duty, they can't ask the questions so we have it there for them because the half a day training isn't enough. Speaker 3 07:04 - 07:06 No definitely not and there's no follow-ups to that as well? Speaker 2 07:07 - 07:17 Well not really but obviously the Oliver McGowan training that's going to be mandatory and we're hoping that will be happen you know annually hopefully. Speaker 3 07:17 - 07:31 So just to remind everyone about Oliver McGowan because obviously Paula we both know Paula very well and she's one of my ambassadors so just talk about what do you know about the Oliver McGowan training where are we at with that and you know are we really there? Speaker 2 07:32 - 08:05 Yeah well I'm on the expert by experience group for that training and we're just sort of looking at We've just decided who have got the tender to deliver the trials, there's five trials. that are going to test out the mandatory training and then there'll be someone who'll look at that afterwards and review it. And we're just sort of in the expert experience group and we're discussing what we would like to see in that training. Speaker 3 08:05 - 08:39 So what sort of things have you asked? For people who don't know, Oliver McGowan is sadly a young man that died. It was Paula's son and we won't really go into detail because obviously she's going through what can we call legal very very difficult circumstances so we won't go into that but this is why this has come about because Paula again was one of our past women's radio station guests a while back now but she's fought and fought and fought to get mandatory training for the NHS and how long ago was it that they said yes we are definitely going to go ahead with it? Speaker 3 08:39 - 08:41 It wasn't that long ago was it? Speaker 2 08:41 - 09:33 No, but I first met Paula when she came to Newcastle when we were launching our Stomp Healthcare Pledge, because one of the things we do, we get a lot of healthcare providers to sign up to our pledge and to embed it in the training. And I remember when she started talking about Oliver, she was talking about how inspiring he was and an outstanding sportsman and how he wanted to complete in the Special Olympics and how kind Oliver was and supportive of others who were less able than him. but then I remember the atmosphere in the room became quite low and heavy when Paula shared the circumstances that led to his death and I just remember the tears rolled down my eyes and how staff seemed to just disregard the family and it really did have an impact on me and I think Paula and Tom, when I first met them, I think they have become a force to be reckoned with really. Speaker 2 09:33 - 09:56 They work tirelessly to influence the national policies and they've gone even further than that because they don't want another family to go through that. They've moved mountains. They've turned tragedy into transformation and loss into legacy all to reduce health inequalities and preventable deaths. Speaker 3 09:57 - 10:28 Yeah so what they're doing is they're working in parallel trying to get justice for their son obviously through all these legal pathways that they're going through at the moment because obviously they want the truth to come out and then also as you said they want to improve lives for other families so people don't have that tragedy and experience what they experience so everyone's you know watching seeing how it's going So is there anything you can give to us of what the training might look like or what you've asked for? Speaker 2 10:29 - 10:42 Well no not really but I have asked for STOMP to be in there because I get so many queries from families and in fact it'd be really helpful to share the history of STOMP because you know a lot of people don't know why it came about. Speaker 3 10:42 - 10:46 Okay yeah you can do it in sort of because we've got a lot to get through so if you can get. Speaker 2 10:47 - 11:21 In May 2011 the issues with psychiatric treatment given to people with autism and or learn disabilities became an area of major public and political concern following a panorama program physical and emotional abuse of people with autism and learning disabilities and following this in 2012 the Department of Health and Social Care they launched an inquiry into the care of people with autism and amongst many of their findings they found deep concerns around over prescribing psychotropic medicines and in response... What sort of medicines are we looking at? Sorry? Speaker 2 11:21 - 12:19 What sort of medicines are we looking at for people listening in? Well there's antidepressants, there's antipsychotics, there's um lots lots of things like that really um sorry so quite heavy medications then i just thought you might have um could share some of the names of them for people listening in in case their sons or daughters might be on elanzapine, cetraline yeah um i'm trying to think of the other risperidone okay there's quite a few of them but what the chief pharmacist found he found um that 30 to 35,000 people with autism and or learned were taken these psychotropic medicines in absence of the condition that they're indicated for because they're indicated for psychosis or depression and these people, when they noticed it wasn't documented that they had these and they were given them because they often misdiagnosed people. Speaker 2 12:20 - 12:29 Autism is neurodevelopmental, it's not a mental health, it's not a mental illness, it's not a learned disability, it's not challenging behavior and I think people need to remember that. Speaker 3 12:30 - 12:38 So what happened to your son if you don't mind me asking because obviously I know but I just want to share with the listeners if that's okay with you what you feel comfortable sharing? Speaker 2 12:38 - 13:01 Yeah well my son went to mainstream school and had a really nice group of friends. I looked out for him and they saw my son's strengths and they focused on what he could do and what he couldn't do. He was never bullied thankfully and my son is very kind and gentle and non-judgmental and basically a breath of fresh air. He stims, but he used to suppress that at school because he felt it wasn't cool. Speaker 2 13:02 - 13:19 But he wanted to go to school, he loved school, he was very academic. But he struggled with the unwritten rules and the social etiquette and the cues. Non-autistic people know instinctively. He was socially fatigued and sensory overloaded, information overloaded by the time he came home from school. Speaker 2 13:19 - 13:58 But when he left school, he was living away from home and he had an acute reaction to stress. and was prescribed psychotropic medicines without a definitive diagnosis, clearly negative symptomology, psychosis and he was assessed by the local health team and We became increasingly concerned about the side effects. He would put on a huge amount of weight, his blood sugar results went up, emotional bluntness, and he started with movement difficulties and a condition called catatonia, which is now believed to be a late complication of autism. And by treating it as so, we've managed to eliminate them catatonic symptoms. Speaker 2 13:59 - 14:03 But there was a very medical model placed on my son, which didn't help, and I nearly lost him. Speaker 3 14:03 - 14:09 So how was that for you? How did you feel? Let's talk a little bit about how you felt when all this was going on. Speaker 2 14:09 - 14:34 Mum, I was very frustrated. and didn't feel like being listened to but as a nurse I was shocked because I couldn't believe what I was seeing because I did my training Anna and I've never seen anything like that before the care of people with autism and mental health because they're trained in autism and it's a very medical model and that is what we don't need sometimes. Speaker 3 14:36 - 14:41 Okay so do you say things have improved since when your son and went through that horrendous experience. Speaker 2 14:41 - 15:16 There's been a lot of families, a lot of people that have been through it that have tried to change it and they've gone on to campaign and we have moved mountains but it's very difficult and I am a little bit concerned now that it's not going to be high on the agenda at the moment. And it's in the government's gift to make sure that autism is on the agenda and these things don't happen. And building 40, 50 hospital units for people with autism and learning disabilities is not what families are wanting because they're often kept in them for years, Anna, and that is not the right place for people. Speaker 2 15:17 - 15:24 Yes, short stay, rest nights or in the community support, but we don't want that model of care. Speaker 3 15:24 - 15:31 So if you had a magic wand what would you have liked to see happen for your son and what do you feel is the best way forward? Speaker 2 15:32 - 16:17 Well, for my son at the moment, I mean, he's carrying on the story because the relationship broke down between the professionals and myself and he was sent away to 200 miles away to a private ATU which turned to be disastrous and we had to get a human rights barrister to free him and I remember that's when I first came into contact with you, Anna, because I was so frightened and we didn't have a voice and I think there was only you around there really about autism. You kind of started it all off really and because I went to the NES and to be honest with you they weren't brilliant and very information this is what should happen but I kept saying this is not happening though these you're telling me these are guidelines the rules but these things are not happening the service provider they're not following that so what do I do? Speaker 2 16:17 - 17:01 So I just basically, my son now is discharged from mental health and has been for many many years, he's not on any medicine and his GP looks after him and she does an annual health check and in that she used to do a medication review but he's not on medicine now so she doesn't do that. and his life's much more normal if you like, he's living in his own home, he's living near his family and friends, he's not a medical model and we had to change our behaviour and perceptions because we didn't understand autism, we didn't understand the sensory challenges and as soon as we were able to do that, as soon as we were able to understand meltdowns and stimming and self-regulating We were less stressed. Speaker 2 17:01 - 17:14 We understood him. You have to listen to people. You have to listen to people when they say that they struggle to go out or they struggle with this or that. You have to really listen and find out how they want you to help them. Speaker 3 17:14 - 17:28 So can I just ask about Mark? How long did it take you to get him out of where he was? Because I'm just thinking of people might be listening in where their son might be in an assessment treatment unit. and they're really struggling, they don't know where to go, what to do. Speaker 3 17:29 - 17:31 So could you give some advice to someone listening in? Speaker 2 17:32 - 18:11 Well my son was in only in eight months which it turned out it was an unlawful detention, he didn't meet the criteria. We fell out, we fell out with the professionals and he, I had to get a human rights barrister like I said and go outside the mental health circle of professionals and he got a bit of compensation, nothing life-changing for how he was treated. But I ended up with PTSD, Anna, because I couldn't quite believe it as a nurse that I saw that kind of thing going on. And then I was just wanting to shut the door, Anna. Speaker 2 18:11 - 18:38 I wanted to shut the world out and look after my son and gave up my job as an A&E nurse. Then Winterbourne kicked off and I thought there's something wrong with this model of care and it was at that point that I decided to have a voice because I quite happily sit in my armchair moaning and groaning at the TV when I see all these families that are coming on the TV and it's about time we need to change that, we need to stop that, we need to change, we need a more positive narrative about autism and not a negative narrative and medical model Speaker 3 18:39 - 19:21 there's so many negative articles as well that are out there that are really not very well written as well so you know people reading them because Patrick sometimes my son he gets a bit worried he's saying oh why are they saying this you know are all autistic people like this is it something I've got to be worried about and that's the other thing that frustrates me like some of these articles that are written about our children about our adults they're just like so incorrect So with reference to interventions for your son what sort of thing, so obviously he came out of hospital and obviously I do remember and so what sort of things did you try and put him in place because obviously would you say he'd lost trust as well? Speaker 2 19:21 - 19:34 Oh, we lost trust. And I actually, they wanted me to work with the same team that sent him in there and I just absolutely refused. I said, I'm sorry, I just can't work with these people. They don't understand autism. Speaker 2 19:34 - 19:49 They're not listening to the family. And my son's getting worse. And so they brought in this lovely nurse and, you know, he said to me right at the beginning, Hazel, I haven't got a clue about autism, but can we learn together? And with that, I can work with that kind of attitude, Anna. Speaker 2 19:49 - 20:17 Yeah, definitely. He stayed with us for a few years and I cried my eyes out when it was time to discharge my son from mental health because he was so lovely. I think it's the staff that can make a difference sometimes, even though you've got all the politics going on and the lack of resources and tools, if you get a really nice nurse or a really professional who's basically just trying to do the best for the person that we're supporting and you work as a team it makes a huge difference Anna. Speaker 3 20:17 - 20:34 Yeah can I ask you as a parent of two men on the spectrum like Patrick's 30 now and Angelo's 27 because obviously we're getting older now and you were just talking to me just before we went online about your husband retiring and do you worry about like when you get older and who's going to look out for your son? Speaker 2 20:35 - 20:49 Absolutely, Anna. It's one of the biggest worries that families will tell you about. I'm quite happy to support my son, but I'd really like to future-proof. If I'm not here, what would the care look like? Speaker 2 20:51 - 21:14 I'm struggling, Anna, because I know there's lots of good stuff out there and placements and support. but I still haven't quite found it, you know, and I'm still, I'm quite happy to still support my son, and I'm able to. He lives in a house on his own? He lives in his own bungalow, but he relies on his family a lot, because he wants it to be family orientated. Speaker 2 21:14 - 21:30 He loves being with his family, and we love being with him, and we go out to holidays, we were camping last week, and we travel, we like similar things, we like traveling, we like going to we're going out and driving the car and so that's really good that we've got similar interests. Speaker 3 21:31 - 21:44 That's brilliant so it's good to hear that he's living in his own place so he's got a little bit of independence so I suppose you're working on his independent living skills all the time and trying to pave the way so that again for when you're dead and gone that the support's in place. Speaker 2 21:45 - 21:57 Have you got things in place like you know you made a will or a trust or anything like that? We've got an LPA, I can't remember the call now, what's the LPA stand for again? Speaker 3 21:57 - 22:32 I always recommend people go to Mencap because I think they've got quite a good organisation there where they can advise you about trusts, they can advise you about making a will because a lot of parents tend to forget about that sort of side of it because the last thing you want is social services coming in and taking all the money and then your son is sort of dumped somewhere after you've done all of this work with him. So would you say being involved in STOMP has helped you drive change and what sort of changes have you made and what sort of changes do you want to make and have you got any new projects in the pipeline? Speaker 2 22:32 - 23:25 Well yeah I mean STOMP you know really important to say STOMP's not anti-medication and I'm not anti-medication as a nurse or as a mother but what we do ask is prescribers monitor and review and really work in partnership with the family I can't get involved in individual cases but I do get a lot of families contacting me so I do refer them to our resources that are on the NHS England stomp website. We also provide eight questions so that they can ask a prescriber and that is about alternatives and what the medicine is for and how long it will be needed. and how do you know when it's not working or how can it be removed safely and what other treatments are available and other kind of things that I try and steer the families to and there's lots of positive stories where we've tried everything to reduce a person's anxiety, Speaker 2 23:25 - 24:28 a 15 year old who's doing GSSC's and got autism and he needed a very low dose of antidepressant of five milligrams when you might think that's really low but that was enough for him to take the edge off and get him through the exams but it was open and we would review it and then he didn't need it after the holidays he just needed for that time period so there's positive things that we do but for the stomp I was very clear early on what I wanted nationally and locally and I wanted healthcare providers and social care to sign up to STOMP and actually write an action plan and say right how are you going to embed that, how are you going to raise awareness, how are you going to train your nurses to be STOMP aware and just advocate for the person with autism. being medicated and also I wanted STOMP to be in the CQC inspection framework and ask STOMP related questions and I also was on the mental health out review and I wanted STOMP into the code of conduct so I want accountability because you know often some of these medicines Speaker 2 24:28 - 24:46 are used for chemical restraint and a quick solution which becomes a way of life and it's very difficult to get the people off of the medicines as well and I think some professionals are not confident in de-prescribing it's very quick to put a lot of medicines up on, give medicines but not to de-prescribe. Speaker 3 24:47 - 24:49 So how many local authorities have signed up to STOMP do you reckon? Speaker 2 24:50 - 24:53 Oh I can't remember, I can't remember off the top of my head Anna. Speaker 3 24:53 - 24:54 Do you think there's quite a few? Speaker 2 24:54 - 25:08 Are they open to discussion? Are they open to listening? Would you say there's quite a few? Across the country and that's what's really frustrating me Anna because a lot of them have signed up but haven't really done what they said they're going to do. Speaker 2 25:08 - 25:49 I was working with a pharmacist that we had on the team and we devised an action plan to go around and visit each health care provider not to sort of like have a go at them but just say what support do you need you know how do you need any help to embed and write your action plans and that but then it kind of got pulled off the agenda really so we didn't do that and plus the pharmacist left but he is coming back so I'm really pleased about that because he's a good one. But we are looking at sort of looking at developing more awareness in the regions as well and collecting better data around autism because we haven't really got, it's not fab data for people with autism and what medicines are on, it's quite a bit on learned disabilities but not autism. Speaker 2 25:50 - 26:06 but I'm really keen about groundswell Anna. I'm a nurse and I want nurses on the front line to speak up and feel psychologically safe to speak up if they feel someone's being over prescribed or inappropriately prescribed and not having alternative interventions. Speaker 3 26:07 - 26:19 Have you got any stories that without giving names away where you can share about what's happened and then stomp a sort of basically gone in there and things have changed. Is there anything? Speaker 2 26:19 - 27:14 There was a young chap who lived in supported living and he had carers coming in and he used to scratch the staff forearms and anyway we have this team as a positive support team with Stomp and I went into the home and and we found out that was his way of communicating he didn't mean to scratch people but he was grabbing their hands to take him to the tap to get a cup of water or his coat to go out for a walk but his day was watching Jeremy Kyle all day well that's no good to anyone that's past that's not active care and then eventually the the teams talked to the communicated with the young man he was on high dose risperidone as well and and the staff and it was kind of the staff's behavior we needed to work on not the chap and also we were able to reduce the risperidone as well it was about understanding the behaviour of the staff. Speaker 2 27:15 - 27:24 They didn't understand autism, didn't understand how it was communicated and he didn't mean to scratch their arm but he was just trying to grab their arm and take them to where I wanted to do something. Speaker 3 27:25 - 27:46 Okay can we just talk about COVID because every week I chat to my guests about how it's impacted on their life, how it's impacted on the community where they live, how you feel it's impacted on the awesome community. So let's start with yourself, how has it impacted on you at all or how are you coping every day? Speaker 2 27:46 - 28:12 Yeah, I mean what we did to support our son was to help him create a new routine within the home during the, well certainly at the beginning of the Covid crisis and this helped him release some of his anxiety and ensured he followed the government guidelines and rules really around Covid even though there were very confusing sometimes and it was a bit confusing for me. Speaker 3 28:13 - 28:20 I spoke to everyone, I speak to people on the spectrum nice and clear and concise the message might have got across a bit. Speaker 2 28:21 - 29:17 But we also we sort of like did exercise videos because we couldn't go out at first and and do sort of different activities in the home because his whole routine had changed but what I did I went further than that I wrote some articles in the local paper about autism and asking for an understanding from the local residents and community that if someone does come outside they may not always understand the social distance rules and be just to be a bit kinder and understanding and also I wrote one about family carers and carers week because I think I wanted the local residents to understand the impact on family carers when all the the centres were closed or the public services were closed that we took on a lot of the support for our son and I wanted people outside to understand that, that extra pressure is for carers because they're health heroes as well because when the services were reduced we just got on with it and so I take my hat off to them. Speaker 2 29:18 - 29:50 But I also we eventually when we were able to go out we would find some kind of remote areas where we could continue with the walking because he does love being outside he loves being out walking and or drives in the car so we still managed to resume that as well but he gets a bit cross when people don't follow the rules about social distancing or if they don't wear the mask when they're supposed to and he does understand that some people can't wear masks for all sorts of reasons but people who should be wearing them and they don't he gets a bit upset because they're not following the rules rules. Speaker 3 29:51 - 30:14 Our kids like rules, don't they? So would you say it's harder work for you now that you're having to sort of monitor everything and because of Covid and because what I've seen to parents as well is we didn't really have time to prepare, did we? It was just like thrown at us and it was just like get on with it. So your mental health, would you say? Speaker 2 30:14 - 30:59 I think after what happened to Mark ten, eleven years ago I kind of like become a bit more resilient and know that I have to stay well because like I say I worry if I'm not here so basically I really draw on my peer support and other families and parents and that's really helpful and I often see you when I'm feeling really low or down you pop up on Facebook and you're doing this, autism's got talent or you're doing this and doing that and it's all positive and it kind of lifts you a little bit, chivvies along and then giving a bit of hope. But for my own, I have emotional first aid kit and in that I have like my favourite book and a sweater or some chocolates or my favourite perfume or my favourite tea. Speaker 3 31:00 - 31:02 What type of books do you like to read? Speaker 2 31:03 - 31:49 I like factual books, I'm not very good for like fiction, I'm a bit of a nerd, sorry, I like all things like that but I have a set of numbers who I can call or things that remind me that I survived, we all survived that horrible time and I'm just trying to stay optimistic and hopeful that the people in power will change things because, Anna, it is in the government's gifts to change things, how people are treated in some of our models of care for autism, you know. And as a nurse, Anna, I am shocked at the scandals that we've had. We've had your Connor Sparrowhawk, we've had the Mid Staff, we've had the two recent ones of Telford and Gosport. Speaker 2 31:50 - 32:01 I don't understand why them things are happening. What's going wrong, Anna? Why why are these certain cultures happening and it's taken a long time to uncover what's going on. Speaker 3 32:02 - 32:07 Do you think it's to do with lack of training or ignorance? Speaker 2 32:07 - 32:11 Yeah, it does worry me what's Speaker 3 32:11 - 32:43 and lack of funding seems to be everything I seem to hear now and I think it's probably going to get worse I hope not but it's to do with like lack of funding and I've spoken to so many different people where things have been pulled now because the local authority doesn't have the funding and that's what I worry about and that's what a lot of parents are worrying about at the moment so what can you see any sort of alarm bells or that you think, oh, I know which way we're heading here now in the area where you live? Speaker 2 32:45 - 33:27 Yeah, I mean, it is getting slightly worrying. But like I say, I'm trying to work within the system to try and have a voice there and try and make them think to do things differently. But it's about, we shouldn't need the Care Quality Commission to discover unsafe patient safety and unsafe and poor quality care, you know, and I think we need to regulate the commissioners as well sometimes because it's not NHS England always, specialist funding, that's funding these 40 bedded hospitals, it's individual commissioning areas in that area that are commissioning them. Speaker 2 33:27 - 33:38 So I think that we need to do a lot more governance, we need a lot more assurance as families what's going on, we need stronger leadership and we need that patient voice Speaker 3 33:37 - 34:06 need to see if you're part of a group. I've spoken to quite a few people where they're part of a group and they think right we're going to drive change we're going to do this and that and the other but it ends up being a tick box exercise and they're not really listening to you but they just want to have it on the paperwork to say oh we've got adults on the spectrum on this committee we've got parents with you know, who've got children on the spectrum on this committee, or whoever it is that they may have, they feel it's just a tick box exercise. Speaker 3 34:06 - 34:21 And I must admit, I've joined quite a few groups in the past few years where I think, all right, yeah, they're definitely going to be doing this and that and the other, and then they don't really listen to you. They've obviously got their own agenda, but it's just to say we had them as part of the group. Have you found that? Speaker 2 34:22 - 35:05 Yeah, and I won't let them. When I say I'm not going to join a group, I'm not going to be, I want to be active, I want to be equal, And I think, you know, I had quite a strong voice on STOMP as well as the Mental Health Act because, Anna, I fought to have autism removed from the Mental Health Act because I think it perpetuates untransformed care and it increases the chance of people being admitted under the sectioning of the Mental Health Act and restrictive practice. and I think if we can move away from, it's newer developmentally, it's not a mental illness and as soon as we change that I think things will start falling into place and focusing more on physical health and sometimes it's the physical health that's possibly causing the person to Speaker 2 35:05 - 35:34 be a little bit more anxious and that you need to sort that out first and we're very quickly to go down the mental health route and it's very difficult and it always escalates and we see our young people ending up in the forensic services, low, medium, secure and it's very difficult to de-escalate them people out of these services back into the community and I think we should never have allowed it to get to that point. We have to start doing things in the community and giving that community resilience and that community support Speaker 3 35:34 - 35:37 So you talk about in the community, what does that actually mean? Speaker 2 35:38 - 36:03 Well, I think when a lot of families say to me, Hazel, I don't mind looking after my loved one, but I need some training on sensory processing because I don't know what triggers a meltdown sometimes. You know, we don't know anything about this, but, you know, these things happen. And also the family support, more family support. so that the person can stay at home and more support in the schools as well. Speaker 2 36:03 - 36:11 There's so much going on and who's going to fund this or who's going to fund that that years pass and that child still doesn't get the support they need. Speaker 3 36:12 - 36:51 I think the thing we've got to remember as well is that all the individuals on the autism spectrum are so different from each other so a lot might not want to stay at home so we've got to think we need to treat each case individual and you know and build the package around them So because we have quite a few people that listen in who are sons or daughters who have just been diagnosed or they may think that their son or daughter is on the spectrum, if you could go back what would you have done differently and also what tips and advice would you give to parents that are just starting on the beginning of this road of the autism road if you like, whatever you would like to call it. Speaker 2 36:52 - 36:53 I wasn't prepared for that one. Speaker 3 36:54 - 37:34 Just think about it, just think, right, so if you just met somebody and their son or daughter has just been diagnosed, what sort of tips and advice would you give to them to navigate them, to help them, to make them feel strong? Because I've spoken to quite a few parents where the system has just totally battered them down and they have basically lost their mojo or have spoken to parents where they believe everything that the local authority say or they read a report and they think oh yeah he's going to get this that and the other but they don't understand that it's got to be written in a specific way so what with that sort of background bear in mind what would what advice would you give to a parent that's just starting down the road? Speaker 2 37:36 - 38:00 Well at the time when my son was diagnosed I it was actually the very first time that there's someone, it was a psychologist that said that she thinks he's got autism and I said, and I got quite cross, I said don't you think he's got enough to deal with? I'm giving him another diagnosis and then as I started to read up a little about it because I found that the professionals didn't really know a lot about autism or even catatonia. Speaker 3 38:01 - 38:03 So keep listening in, what is catatonia? Speaker 2 38:04 - 39:00 Or catatonia, it's a movement disorder and in its extreme form you see the person unable to move, eat, they can't initiate or complete tasks and it's always been linked to schizophrenia and it's very medical model treatment where a lot of evidence is now emerging that it's a late complication of autism and their needs are not being met and that person you know if someone's really anxious and they're not getting their needs met and in the wrong environment they'll either they'll either withdraw and they'll stay in their bedroom and not go out or they might become quite aggressive because they can't emotionally regulate their emotions or they'll shut down like my son did he just wanted out and it was so sad to see but once we started treating it as a late complication of autism he started to improve because we understood better what was going on and it was Amita Shah, Amita Shah who was an expert in autism. Speaker 3 39:00 - 39:10 I remember you talking about her to me actually, but so what you're saying basically to families is arm themselves with information, become and try and just learn as much as you possibly can about the system. Speaker 2 39:10 - 39:50 If you're a professional you're dealing with knows about autism just do it yourself and know your rights and just speak to other families and of similar age children and I'm afraid it's a battle. I mean they say that 10 families will go to try to get support and help and jump so many hurdles and only about two or three will get the package of care that they really want for their need for their child and it just it's that what wears you out Anna, it's fighting the system and getting the rights for your family. It's not hands-on care of looking after my son, it's the fight in the system and it just makes you stressful and as I say I ended up with PTSD with it. Speaker 3 39:50 - 40:40 So I think the thing with fighting for your family, if you can get somebody to help you as well, you know obviously before you used to be able to go to meetings but now a lot of them are happening online, so try and get someone who's really knowledgeable or if you're feeling overwhelmed just try and get them to come on board with you so that they can support you and prompt you as well. I always say make lists as well before you go to the meeting of what exactly it is that you want to say because sometimes you can get so emotionally charged that you forget to say things or make as many notes as you possibly can and then always back it up with an email or a letter because you know sometimes you say things verbally and then they don't materialize so yeah I what would you say because I'm interested always interested in diagnosis as well what's the diagnosis like in Harrogate how long are people having to wait? Speaker 2 40:40 - 41:10 do you know? I think it's just like every other area Anna, but I think when a lot of people have been doing assessments online with Covid and the feedback from there is that from the people with autism is most of them quite like it that way that they don't have to go out and go to the assessment room and even the Assessors are finding it easier as well. It could be a change in the future. Speaker 2 41:10 - 41:32 I mean I was always against online assessing but I think Leeds Partnership did a little study on the people who they assessed and quite a lot of the autistic people fed back that they quite preferred it that way. So you know remote working might be a way that way we go forward on that. Speaker 3 41:33 - 42:01 Okay so it might even shorten the waiting list you don't know but I think you need to have both you need to have where people if they want to meet obviously physically because I think for me personally I probably want to go and meet the person but then you've got others that prefer to sit at home and obviously go through the process at home. So again one of your questions that you wanted me to ask you was about what advice can you give professionals so do you want to touch upon that? Speaker 2 42:02 - 42:35 Yeah well I think it was mainly just to sort of If a person is struggling to self-advocate, it's to advocate for them and that they're going to need to know about STOMP as well. And actually, when we're doing the training, the autism training across all job grades, a lot of nurses come to me afterwards and say, you know, I really want to find more about this. I think this person's been over-medicated, but I don't feel psychologically safe or confident to speak up. because our system, our NHS system, is quite hierarchical. Speaker 2 42:37 - 43:19 Even though we've got the speak-up guardian or the duty of candour to try and increase patient safety, some nurses don't feel confident challenging a medical really or a psychiatrist and that's got to change because some families might not be able to challenge or speak up as well and that's where the stomp resources come in because we have little booklets that you can take and you can monitor the blood results or ECG you can write them down in the book you can ask questions what you need to do you can ask what medicines it can tell you about what medicines are for and if they're working and all that so we've got lots of resources online for professionals as well as families. Speaker 3 43:20 - 43:24 So if somebody's searching to find out more information about stomp where would they look? Speaker 2 43:25 - 43:40 if I was just trying to look for the I've got the thingy there but I think it's NHS stomp okay www.nhs.stomp if we just take that and it'll come in and then we've got lots of resources for um for professionals and families Speaker 3 43:41 - 43:49 And you're obviously on social media, would you mind if somebody wanted to ask you a question if they followed you on social media, would that be okay with you? Speaker 2 43:49 - 44:42 Yeah, yeah. We are trying to get more support in the community as well and I was just talking to a team last week that's got a psychologist in it and it's a psychology workers as well, support workers, and they actually go into the home and do a bit of troubleshooting because this 15 year old young boy who's got autism was staying in his room and he wouldn't come down for his meals and when they went in, and they've got a younger sibling who's got autism as well, they've got two younger siblings but one's got autism, when they spoke to the young boy, because he was going to end up in a tier 4 CAMHS bed, they found out that he couldn't come down to his breakfast because his little brother was quite vocals stimmed and it was quite chaotic the breakfast time so he couldn't bear to Speaker 2 44:42 - 45:29 come down and also it turned out that he wanted to spend time with his mum and dad on his own. He was 15 years old and having two younger siblings I think he kind of got and it was simple things like that that the team looked at and then they did like a structured timetable for the younger siblings so that he knew what was to expect during the day and what time breakfast was and was and it's just sometimes we need to become complex and when they're actually quite simple to sort out sometimes and help because sometimes parents are so busy they can't see the wood for the trees can they and they just end up getting so stressed and it becomes a very highly emotive environment but actually getting a team going in there and I'm a big fan of psychology they've got a lot of good tools in their box to help people I mean a lot of psychiatrists go to their neuroscience colleagues Speaker 2 45:30 - 45:45 in search of a cure for autism or whatever and not always get it right but I think they'll leave out the psychology colleagues because they've got some really good ideas as well and then you don't have to go down the medication route and then you don't have to go down the tier 4 beds Speaker 3 45:46 - 46:23 Is there any other sites or links that you can recommend for parents listening and that might be useful for them to look at? And then obviously what happens is after the show is I always ask my guests to write an article about what they've been speaking about so it will be on the charity website during the week so if you missed some of the stuff that Hazel's been talking about or you didn't quite catch it, write it down, Hazel will write an article and it will be on the charity website. So is there anything, are there any books or anything that you can recommend that people read that you think that's really useful? Speaker 2 46:24 - 46:29 Oh gosh, there's loads of books Anna, even yours is brilliant, you've written books. Speaker 3 46:29 - 46:37 Well it's a long time ago, 2009, but I'm saying is there anything that jumps out in your head that you feel, oh that's a really good book a parent should read? Speaker 2 46:38 - 46:53 There's loads of books, but social media, because of what happened to us, a lot of families came about. We all came about on Facebook after the winter born and a lot of families and it was Rightful Lives and bringing us together and they've written guides as well. Speaker 3 46:54 - 46:58 Rightful Lives, what is that? Is that a book? What is Rightful Lives, sorry? Speaker 2 46:59 - 47:32 Rightful Lives is a Julie Newcombe and Mark Neary, it's hashtag Rightful Lives and that's a good resource on Facebook as well and bringing us together. For people who've been in inpatient settings as well and not getting the support in the community. And some of the cases have been high profile in the media because what happens is, Anna, a lot of families go through the NHS complaints procedure and they just hit a brick wall. All the defence walls go up and they get nowhere. Speaker 2 47:32 - 47:38 So unfortunately some of the families go to the media because they don't know how else to raise the alarm when things are not right. Speaker 3 47:38 - 48:10 I've just recently had someone message me actually who's an adult themselves who has asked me could I help her with some media stuff and I get that intermittently all the time because they just feel as you said walls go up when people are not listening. so this is a show about mental health and well-being so obviously we need to keep because you said I need to keep myself well how do you keep yourself well because obviously we can't afford to you know keel over we've got to look after us what do you do to keep yourself well Speaker 2 48:10 - 49:06 Well I am quite a resilient person and that whether being an AD nurse you have to be resilient because you have to bounce back quickly and you have to have that health and work balance and you have to look after your own health but you have to also reach out to other support systems around you like don't do it on your own it's really hard and it really speak to another parent or speak to another parent forum and just keep connected with the outside world that way. But I just, I love my son and I love looking after him and supporting him and being with him and you know he it's not all negative being a carer there's a lot of positives because do you know what since I become a carer I notice the small things in life and we've brought the family together as well better because we're all doing our own things like running around like headless chickens and that and you don't you don't see things you don't appreciate things and you know we go out photography we were photographing puffins at Speaker 2 49:06 - 49:24 the last week I'd say at the seaside you know things like that we spent hours there and I would probably never have done that before because I would have just been running around A&E or doing this this and that and actually you just need to take some time out and appreciate the beauty around that you've got around you and enjoy each other's company. Speaker 3 49:24 - 49:52 I've heard so many people say that because since they've been in lockdown and Covid they've sort of been more about family because as you say you know you do run around like headless chickens or even like sort the house out a bit because it's just things just get left and yeah so there was something else I was just going to ask and it's completely, oh I know, why did you become a nurse? Like I always like to ask people why did that chosen profession, what made you want to become a nurse? Speaker 2 49:53 - 49:57 Ooh, that's thinking back far. Speaker 3 49:59 - 50:00 And was it what you thought it was going to be? Speaker 2 50:01 - 50:22 Yeah, I quite liked it. I mean, I can't remember how I got into it now, Anna. I can't remember. I think my friend was a nurse and she was telling me about it and I went to meet her manager and I got talking and I did my training at York University and I never knew which part I wanted to go into. Speaker 2 50:22 - 51:29 We had a choice of learning disabilities, mental health, acute general nursing, and I went into general nursing and I was never, I was always, even though I was an A&E, I always leant towards mental health because we used to get a lot of people with mental illness, distress and that and I felt sometimes the attitudes of my colleagues weren't always nice and they didn't understand mental health problems and things like that so I always had a soft spot for people that would come in and try and help them but I was actually interviewing at the weekend about major incidences and that and it took me back to when we did our training in major instances because obviously pandemic now we really do need to have community resilience and individual resilience as well we've all got to step up the mark I think and support support everybody really, support the organisations, the NHS, the social care, we've got to do our bit because things are changing in the world and I think we need more information about how we do emergency planning and for pandemics and things like that. Speaker 3 51:29 - 52:01 So you've been a nurse for quite some time, have you had any other jobs in the past or have you always been a nurse? I'm just trying to get the picture of you because you keep talking about how much you love to be a carer and I totally get that but I just want to get a little bit more into who Hazel is because obviously you're a mum, you're a wife, you've been a nurse, so it's just a little bit about you, your thoughts, your dreams because you know you are still Hazel. Speaker 2 52:02 - 52:28 Oh I know but the thing is Anna since I've become a carer and I think I've become such into the campaign work because I really want to change things I don't want my son he's already experienced a bad experience of the case and if I die I want to know that the system's a little bit better so I've been focusing on that and you know I don't have any fun or anything at the moment on myself, I've forgotten me I think, I've lost me I think in all of this. Speaker 3 52:28 - 52:50 Yeah that was the thing and you know why I asked you that was it was because that I know it was five years ago I did Strictly but when I met Robin and I have mentioned this before I didn't even know what fun was It was just that, that was the time when I did start doing that dancing. That is because I was so focused on being a carer, so focused on, oh, because Angelo always needs one to one support. You can't leave him on his own. Speaker 3 52:51 - 52:58 He's got no sense of danger and all the rest of it. And you become so focused on your sons. You forget about who you are and having a bit of fun. And I think. Speaker 3 52:58 - 53:32 after I've done that and I'm not sure if I've become a better person, that's not the right thing to say, it's to do with sometimes I just think oh I can have fun, it's very important that the work that we're doing and all the rest of it, it's good for your own mental health and well-being and that was the first time after such a long time that I started to have a little bit of fun, you know I'm 60 now and Obviously, you know, time flies and there's lots of things I still want to do, but you've got to still be fit, you've got to still be healthy, as well as looking after your sons. You know, both my boys are still at home. Speaker 3 53:32 - 53:55 I'm hoping that Patrick's going to find a flat, but things are going to be delayed now because I know he's anxious about COVID and all the rest of it. And Angelo is always going to need one-to-one support, so I'm thinking, like, how's that going to pan out as I'm getting older type of thing. So there's all these things to think of in place but you've still got to think about you as well because I think it helps you as well with your son. Can you see where I'm sort of coming from? Speaker 2 53:55 - 54:00 Yeah, but very few people ask me. You think you're the first person that's ever asked me. You know that? That's really weird, isn't it? Speaker 2 54:00 - 54:04 And I really don't know. That's because I really put it on the back burner. Speaker 3 54:05 - 54:14 Yeah, because you're still Hazel and you don't have your own identity because you keep saying, oh, I love being a carer. I love being a carer. And I totally get that. But I'm just thinking, what about you, Hazel? Speaker 3 54:14 - 54:15 What about you? Speaker 2 54:16 - 54:32 I know. Mark's going to need care for the rest of his life, 27 care, so I kind of don't make any plans for myself in the future because I just don't know what's going to happen. It's unpredictable, isn't it? Speaker 3 54:32 - 55:00 Yeah, at this moment in time it is most definitely, you know, because obviously we're living through this pandemic. I went into the town today and I still can't get used to seeing people with their masks on. I just find it really weird. It's like you're in some sort of movie or film and yeah and I know that when I do put it on, Angelo looks at me and it's like his face is just like and now Patrick is really getting it that he's got to wear the mask and you Speaker 3 55:00 - 55:42 know he's now beginning to say oh Covid's really beginning to get on my nerves because he's worried about the future of museums like for him we've got all these different worries but for him it's like because museums is his passion you know he wants to go to university as well as do part-time and then work as well so lots of things he's thinking about and he's feeling that Covid's getting in the way so um we've just got to sort of keep reassuring them all the time that's all that we can do really isn't it. Has Patrick gone back to work Anna? He has he was on furlough for nearly four months and he found it really hard going back to work and the reason being is everything's changed a lot of people haven't come back to work whether they've been let off or whether they're working from home so he's finding Speaker 3 55:43 - 56:07 the change part of because he loves Pinewood Studios but everything's just changed and he's just finding that part of it quite difficult and he's been coming home really frustrated a bit angry so it's just constant reassurance it's not always going to be like this but it's going to be like this for a little while That's what we seem to do with it for our sons, we're constantly reassuring them even though sometimes we don't even know the answer ourselves. Speaker 2 56:08 - 56:09 I know, we do. Speaker 3 56:11 - 56:22 So we're coming to the end soon of the interview, we've still got a few minutes, is there anything that you want to share before we go off air and before I thank you for speaking to me? Speaker 2 56:23 - 56:26 No, I think I've exhausted myself. Speaker 3 56:26 - 56:36 Do you know what? I've thrown you now because what does Hazel want to do? Who is Hazel? So that's your homework now. Speaker 3 56:36 - 56:45 I'm going to ask you in a few weeks time, have you really thought about it? So just to remind everyone then of STOMP, where can they find it if they want to find some information? Speaker 2 56:46 - 56:49 It's www.nhs.gov.uk Speaker 3 56:49 - 57:03 it's just capital s t o m p just to remind people of what does it stand for stop over medicating people with autism and learn disabilities okay and you said there was stamp and what does that stand for Speaker 2 57:03 - 57:42 oh i know i have to get it i can forget let me just okay so that's for children it's for the it stands for the children and it stands for um um supporting treatment and appropriate medication in paediatrics so can anyone um as in a parent can they access that or is it just for professionals No, there's resources for carers and professionals and actually what I'm doing with A&ES I've managed to get some funding from NHS England to look at our resources because they're very learned disabilities focused for just for people with autism so we're working on that at the moment some more resources booklets just for people with autism Speaker 3 57:43 - 57:58 Okay and just to remind me of that website on Facebook that you said that rightful lives rightful lives hashtag that's on Facebook and again is that a closed group or an open group can anyone join that? Speaker 2 57:58 - 58:02 It's an open group and this is bringing us together. Speaker 3 58:04 - 58:16 Right so it's bringing us together is that another website you're telling me about? On Facebook. Right okay anything else any books anything that you want to share? Anything you want to shout out about online? Speaker 3 58:16 - 58:22 My head's fuzzled now! Speaker 2 58:22 - 58:23 I read loads of books. Speaker 3 58:24 - 58:48 You know what you can do? When you write your article, if there's anything that you feel that people need to know about that you feel is going to be really useful for them, please put it in the article. So again, if people want to write an article for me for my charity website, it's www.annakennedyonline.com. If you want to follow me on social media, it's at Anna Kennedy One on Twitter, Anna Kennedy Online on Facebook. Speaker 3 58:48 - 59:19 Anna Kennedy OBE on Instagram I'm always updating stuff all the time any information any resources I keep sharing it on social media if there's anything that you feel that you want to share with me please send it to me either via social media or via the charity website So just to finish off, Hazel, I just want to say thank you so much. I'm really proud of what you've become because obviously I knew you when you were going through all those struggles and the frustration that you had with your son. I just want to say I'm really proud of what you've achieved. Speaker 3 59:19 - 59:27 It's just amazing. So keep going, keep fighting and don't forget to think about yourself. I know. Speaker 2 59:28 - 59:31 Thank you for inviting me, Anna. It's been good. Speaker 3 59:32 - 59:41 Thank you and best wishes to Mark and best wishes to your husband and keep walking and keep yourself fit and keep going. Yeah thank you Anna. Speaker 1 59:42 - 59:46 Okay thank you everyone for listening, keep strong, keep safe and bye-bye.