I met Lisa Perry over a year ago when running a course with Dimensions UK (in partnership with OxFSN) about employing your own staff. Like lots of parents Lisa was looking to the future. Recognising her then 15 year old son, Aidy would probably need a bespoke kind of support package she was interested in how this could work for him and wanted to develop the skills to do it.
I met Aidy once during the course. He came in with his dad before a shopping trip in town (His favourite activity). He was happy, lively and excited to be going to do something he loved.
Lisa came to a couple of our meetings about the peer to peer support project to support families whose loved ones (with learning disabilities) were sectioned under the Mental Health Act. It was obvious to me then that like some of the other parents who attended those meetings Lisa was terrified that Aidy could very well find himself in this situation and she wanted to be armed with the information she’d need if the worst happened.
This is what has happened so far and the current situation. It is documented here in an email from Lisa. Aidy’s mum.
May – November 2014, Brooklands ATU, Birmingham
On 30 April 2014 Aidan was sectioned and admitted to Brooklands – an ATU in Birmingham. Initially he reacted to the incidents of other patients (either becoming very excited and trying to get to the other young person, or by displaying aggression himself) and was frequently restrained. (It was written into his Care Plan that being restrained should be a last resort as Aidan reacts very badly to this and it only escalates the situation.) Medication was changed – Risperidone/Fluoxetine removed, Apripiprazole/Propanolol introduced.
Aidan remained at Brooklands until mid- November when he started at MacIntyre’s Endeavour Academy – a brand new residential school in Barton, Oxford.
November 17th 2014 – January 10th 2015, Endeavour Academy, Oxford
Still coming home for weekends, Aidan had a good first few weeks at EA, but behaviours gradually escalated – minor hitting out and non-compliance. We believe that living with others with ASD and possibly the fact that he was mostly confined to school was difficult for him. He had a reasonably settled Christmas at home. Whilst the school were seeing deterioration in Aidan’s behaviour, EA did not flag this as a concern with us until the morning of his incident – possibly we should have discussed a different approach involving Aidan being given additional support to be taken out more if we had known things were getting difficult. He returned to school on 5/1/15 and over the next couple of days spent very little time out of the residential unit. On 7/1/15 in class, he witnessed another student having a seizure and being taken away by paramedics. Despite appearing uninterested during the procedure, afterwards Aidan had a major incident where he hit many staff and broke a glass door panel and tried to climb through. Possibly Aidan was trying to get to his place of safety – his bedroom, and he was targeting staff who were blocking his “escape route”. Additionally, it seems that during this incident, additional people arrived – the opposite of what we have found works at home.
The Psychiatrist from LDCAMHS was at the school and approached him during the incident to give him Lorazepam, and she was also hit. She decided to section Aidan again and he remained at the school for 3 nights on Lorazepam. Aidan’s weekly schedule was set a week in advance. This included being at home Friday-Sunday. After this was denied on the Friday night, his anxieties with the change of plan built up so much that on the morning of Saturday 10th January 2015 Aidan became very agitated. The police were called and Aidan restrained. In handcuffs and leg restraints he was taken to the Vaughan Thomas adult ward at the Warneford Hospital.
Aidan has again been sectioned under the MHA and is currently in the High Dependency Ward of the Highfield Adolescent Unit on the Warneford Hospital site in Oxford. (N.B. this is not a specialist LD unit)
“During this time he was supported by staff employed by the Highfield unit and did not mix with adults. Unfortunately, this meant he was kept in a very small area and when he asked to leave and this was denied, he pulled an emergency exit sign above the door off. Alarms went off and he was again restrained. At 4pm on Monday he was transferred to the Highfield Unit.”
Aidan has been reasonably calm on the Highfield Unit but is understandably distressed at being detained. He is doing a lot of pacing around the unit and we believe his confinement is escalating his anxiety. There have been a few incidents where Aidan has shown aggression towards staff, possibly exacerbated because he has asked to come home and has not been allowed to. Aidan is not typically violent, and is a very happy boy if his needs are being met. This involves him having a high level of control over his activities, going where he wants, and over his environment. Whilst these needs are sometimes difficult to meet, this does not warrant sectioning him in a psychiatric unit. This is not his solution.
There are currently no learning disabled mental health psychiatric beds available in the country. Aidan is being assessed for the Ferndene Unit in Northumberland on 21st January. He is also being assessed by St Andrews in Northamptonshire on 30th January (he has already been assessed by one doctor from St Andrews).
Bill Mumford, CEO MacIntyre (MacIntyre Endeavour Academy is Aidan’s school), is involved as are other members of the Macintyre staff. Bill is pulling together a team which will hopefully involve Oxfordshire’s LDCAMHS, Social Services and the Psychiatrist used by Improving Lives to explore possible solutions for Aidan. The solution probably doesn’t yet exist, but Bill hypothesized it would be a bespoke, local solution with long-term support. Over the last year it has been well proven that a unit with other autistic peers (maybe having their own incidents) is not a possibility for Aidy. It is apparent that his needs are unique and complex and we are hopeful in adulthood, he will have his own place and his own team. He does enjoy the company of adults and is very sociable. He enjoys going out in and around Oxford and has many people who are familiar to him here.
Whilst we realise that under the MHA there are restrictions to where Aidan can be, we want to keep him as close to us as possible. We are taking legal advice on our rights and what we can challenge. He spent 6 months last summer at Brooklands Adolescent Psychiatric Unit in Birmingham, and we do not think it is in his best interests to go into another similar unit. He needs to be in an environment where his experiences are closely controlled – certainly not one where he will be subjected to others having frequent incidents/restraints – but where these incidents can be minimised. Although I know both units coming to assess Aidan have an excellent reputation, we are hoping Oxford can utilise their expertise, to support Aidan at home and school with local psychiatric help. With regards to Northumberland, apart from the logistics of visiting him (it’s five and a half hours drive one way), we have huge concerns regarding rehabilitation of Aidan back to Oxford. We believe, as does Bill Mumford, that his placement needs to be connected to where the ultimate solution is going to be. Possibly school could support him more flexibly. (For example, could MacIntyre No Limits be utilised to possibly take him out and about in the afternoons? He finds staying in one place very difficult.)
We – his parents, his extended family, friends, and Endeavour Academy staff are important to Aidan. He is asking to come home or to go to school, and it’s important to him to remain close to us all to help him keep a sense of hope and perspective on what’s going on in his life currently. Also we are strong advocates for Aidan as he is unable to make his wishes clear. We know the best ways to communicate with him and what works to support him appropriately. We are able to identify immediately if, for example, a change in medication were to cause a side effect (as we did last year when he developed tremors). How could we possibly be expected to do this if Aidy was so far away? Aidan also has two sisters who are devoted to him, and want him home. We need to support our girls too and this would be very difficult if Aidan was several hundred miles away.
We are hoping that Aidan will be allowed leave on a Section 17 soon to reduce his anxiety, and so everyone can assess how he is in his familiar surroundings. We believe that if he is happy at home and we can support him here, this further supports the case against him spending the next few months in a psychiatric unit. We are grateful to Bill Mumford and Brenda Mullen from MacIntyre for their immediate response to Aidan’s situation and look forward to meeting with many of you to discuss Aidan’s support in Oxford very soon.”
An update on Aidan and us: sent today 22/01/15
‘I believe everyone involved in Aidan’s care, (which include: Us – Aidan’s parents, Dr at LDCAMHS, Dr from the Highfield Adolescent Unit, and professional from Childrens’ Continuing Care, Oxfordshire County Council’s Disabled Children’s Manager, and Aidan’s Social Worker, OCC SEN lead, MacIntyre (who have reinforced their commitment to setting up something bespoke locally for Aidan including housing) and Hazel Watson, Mental Health and Learning Disabilities Lead for NHS England. Hazel also heads the Improving Lives initiative. Her staff have been informed and are willing and ready to advise on Aidan’s situation. All are agreed that in the long term, Aidan needs this bespoke, long-term, local arrangement to be set up by Oxford. However it could take a long time to set up – likely to be months.
We, Steve and I, are very keen for Oxford to be moving along with his solution. However all professionals and managers are waiting until they have the assessment feedback from St Andrews before they start working towards Aidan’s discharge planning, once it is clearer what treatment/care he should be receiving on a longer term basis ie. after the Highfield. Our concern is that we are being pushed into an ATU stay for Aidan as a “holding pen” whilst his bespoke solution is prepared. Aidan is doing well in the HDU at the Highfield as there are low demands on him and we have spoken with Dr (from Unit) regarding taking him out around the Warneford site and eventually leading up to Section 17 home leave. In an ideal world, we would like him to remain at the Highfield with section 17 leave until his local support placement is ready. We are worried that entering another ATU where high demands are placed on him and exposure to other young people similar to himself will be extremely detrimental and not in Aidan’s best interests. While Dr (at Unit) is supportive of Aidan’s care remaining local, he is expressing concern because Aidan is occupying the whole of the HDU because there may be difficulties arising from him sharing the space with another young person with their own difficulties. So he is ‘bed-blocking’ (not Dr at Unit’s words!) We are challenging what value additional months at an ATU will give us and Aidan (other than a holding pen)?
The Family are currently seeking legal advice about the following. If anyone reading this can help please, please, please get in touch
- What rights do they have regarding Aidan’s transfer to an ATU versus his staying at the Highfield? It could be argued that the Highfield is not an autism specialist centre, but Aidan has already been at many autism-specific placements, but what he needs now is the correct environment, with careful exposure to things that he enjoys whilst his long term solution is arranged. Whilst they are aware that this may be an unpopular/inappropriate use of the HDU at the Highfield, they believe it has been done before and Aidan surely has the same rights as any other unwell young person from Oxford.
- How likely are they to win a challenge to his section 3? This will depend on whether his psychiatrists deem him to be dangerous. They argue that given the right environment and support, Aidan is typically contented (albeit very demanding and hard work). They are also willing to keep him at home although this will be difficult long term unless his support package kicks in soon.
My questions and comments:
- It’s clear that Aidy reacts badly to other young people similar to himself, with their own difficulties so why was he sent to such a place in the first place? why wasn’t a bespoke package of support the first option when it was clear to those who knew him this was the only thing that would work for him?
- Why were the family not informed of escalating behaviour when they could have possibly helped? Another demonstration of not listening to families, who know their loved one best.
- Why were the things important to Aidy ignored (being confined and not getting out and about, his weekly routine and going home on Fridays, not having additional people in the room when he gets upset’)
- How can it be right to restrain, handcuff, leg cuff a child of 16 years old with learning disabilities – a kid who wouldn’t understand what was happening to him and who was already obviously distressed and when it was made clear by the family that this only exacerbated his anxiety and escalated his behaviour?
- What good can come of being sent to an ATU hundreds of miles away from home? If Aidy is safe and currently doing okay at the unit he is in (albeit a holding pen) why move him to another unit and distress him even more?
- Aidy wants to come home, his family want him home. Everyone involved in his care believe home with a bespoke package of support around him home would be the best place for him. This is a matter of urgency why is it assumed it will take months?
To me, this demonstrates why learning disability services need to be proactive not reactive. Kids like Aidy are not going away, there have always been people with needs like his and there most probably always will be so why do we wait until the system fails them instead of setting up bespoke support that won’t. It demonstrates why person centred, positive behaviour support and working closely with families is so vital when working with children and adults with such complex needs. And why where someone lives and who they live with is so important and how getting it wrong can have devastating consequences.
It demonstrates clearly why the LBBill is so badly needed and needed now.
* please follow Lisa on Twitter @LisaPer83819459 any help or support that can be offered will be gratefully received