Day 35: ATUs, autism and anxiety #107days

Louise adopted Day 35, to share some of her thoughts on assessment and treatment units and their suitability (or not) for people with autism. She wrote a blog post to share her experiences and thoughts that is shared in full below:

I am a Nurse who works with individuals with Learning Disabilities. I was heartbroken to read about the avoidable death of Connor. I have worked in assessment and treatment since qualifying in 2009. Prior to this I grew up with a younger sibling who is on the autism spectrum and has complex needs and epilepsy.

I am currently taking some time away from this working environment after experiencing high levels of anxiety and a constant feeling that no matter how hard I try I feel frustrated that I am unable to provide care to those I trained so hard to support.

In this post I don’t wish to dwell too long on my own feelings about assessment and treatment units.  Despite my frustrations I have been so privileged to support lots of amazing people who have allowed me to support them when they are at their lowest. I was able to go home after my shift (very rarely on time) but I was never able to switch off from the frustration I felt.

I don’t believe the system that exists works in favour of those with autism. I believe that many people with autism who are admitted to assessment and treatment units live in a heightened state of anxiety during their inpatient stay. There are various reasons for this and in this post I would like to highlight a just few.

Environment

No matter how the service tries to be welcoming it is still a clinical environment, nothing like home, school or day services. Echoing corridors, lack of natural light, strange noises of people that are unknown to the service user, funny smells of hospital dinners, funny smells of other people, the clattering of the dinner trolley, the rattle of keys. Changing staff every day. Running about from one thing to the next. Screaming, shouting, and swearing. Sometimes it’s too hot and sometimes it’s too cold.

Communication

Ever been on holiday to another country and wished you could understand what was being said? In the inpatient environment non-verbal cues may be different for a person with autism. Staff may use a different regional dialect; the pictures used to communicate may not look like those you are used to.

Use of Seclusion rooms and PET

How terrifying would it be for ‘stimming’ behaviours to be misread as aggression, to be offered medication when it’s not time to take it? To want to stand close to the nurses and carers and smell them and feel them to make sense of whom they are to feel safe? For them to misunderstand this and the next thing you know loud bells are ringing and lots of people are running towards you holding you when you don’t like to be touched?

The seclusion room could be terrifying to a person with learning disabilities yet they are still used within mental health services to maintain a safe environment. Equally the seclusion room could be a welcome escape from the pressures of the ward environment.

Unpredictability/predictability

The atmosphere on the inpatient ward can change at any time. It can become very noisy very quickly. This can be frightening when you don’t know why.

Despite the quick changes in atmosphere the unit has an underlying ‘routine’. If you have autism and you stay on the assessment and treatment unit for a long time could there be a possibility that this ‘routine’ becomes your routine?

Could the change from the inpatient environment to community upon discharge provoke high levels of anxiety? Just as it did upon admission?

If the reason for admission and the prescription of PRN medications is for challenging behaviours linked to stress and anxiety how likely is it that an improvement in this behaviour will be observed within such a pressured environment?

Staff

The pressure placed upon staff in the inpatient environment is high. I have seen high levels of sickness, high turn-over of staff, agency staff coming and going, Low staff numbers and a mountain of paperwork. I have worked shifts when I have been unable to access the bathroom for long periods, get a drink or something to eat until the shift is over (12 hours).

I have worked with lots of very experience staff and have often wondered why do people not understand autism? Information is shared and training has begun to be rolled out to staff, yet behaviours are still misunderstood and seen as (at best) controlling and (at worst) rude and awkward by staff.

Failure to work with existing support networks

I know that when I was in hospital being around those who were familiar to me was a great comfort.

The way the inpatient environment is designed it is difficult (but not impossible) to utilise the existing support from families, support staff, schools and friends.

Due to the complexities of safeguarding/confidentiality staff nurses who are often not experienced in working with families during such a sensitive time often make decisions from their understanding of policy and procedure instead of seeking flexibility in the best interest of the patient.

Call for action

I strongly believe that change needs to happen, for service users and staff alike. With the privatisation of the services used by individuals with complex needs I fear that needs are now at risk of being overlooked. Care packages could be seen as a commodity and levels of support could be at risk of being reduced for all the wrong reasons.

I believe that it is essential that the government provide adequate funding to address the health needs of individuals with autism.

Staffing levels need to be increased and better support needs to be put into place for staff.

Autism awareness and how it relates to nursing practice should be mandatory to all staff.

Work should be done to ensure that established routines and family contact are maintained during any inpatient stay.

Families should be involved in care planning and information sharing.

Lead family liaison Nurses should work with the families to keep communication open and constructive.

Thank-you for reading, Louise

Screenshot 2014-04-23 05.56.04

Day 10: Hand in Hands with AL #107days

One of the aims of #107days was to raise awareness about #JusticeforLB and all young dudes and dudettes, about the reality that they face and some of the alternatives that should ideally be available. To some extent what happened to LB was due to the lack of appropriate provision available to him and his family as he approached adulthood. A number of people have got in touch to adopt a day for #107days to share some of the work they are doing to improve things. Day 10 was adopted by Michelle Dudderidge, this is what she had to say about why she got involved:

You can see from the images of LB he was a good-looking, happy young dude. He was tragically failed by the people who should have fully supported him and kept him safe from harm. #JusticeforLB is important to me as LB’s death needs to be acknowledged and those responsible need to be punished to ensure this doesn’t happen to anyone else!

This is Michelle’s story:

In 2011, following Winterbourne View, I established a supported living service, in Hertfordshire, Hand in Hands, to support vulnerable adults with Learning Disabilities and behaviours that challenge, to live independently in their own homes.

I always wanted the organisation to stay small, to enable us to make a difference to the lives of a few individuals and not compromise the quality of the support offered and ensure I remained in control. We now have three services in North Hertfordshire, each can be home to four individuals. As we have only recently opened the second and third services we currently have six vacancies to fill across both.

My aim was, and still is, to ensure those accessing our services have the quality of life that we ourselves would wish for, in a society free from discrimination.

…and this is AL’s story, Hand in Hands first individual:

AL Before

Our journey with AL began in November 2011, 4 days after his 18th birthday. He was living at home with parents who had seen a change in behaviours since he had left Residential School and were finding him increasingly difficult to manage.

In December 2011 AL was admitted, informally, to an Assessment and Treatment unit in Buckinghamshire. AL was in the ATU for 97 days, during which time we undertook a transition period to prepare him to be moved into supported living in March 2012.

Although AL’s Psychiatric Consultant was, and still is, very supportive of what we wanted to achieve for AL, the care staff (many of whom were agency workers), were not as optimistic. The staff told us as AL is non-verbal, “he will never be able to communicate effectively”. AL now uses picture cards and basic Makaton to ensure his needs and wishes are known.

The staff told us AL would not be able to live safely in the community, as he “required far too much PRN medication to manage his unpredictable behaviours“. AL has not had any PRN medication since July 2012. He continues to be managed on a 2:1 staffing ratio, as has been the case since day one, and he is also fully supported through a robust Behaviour Management Plan.

The staff told us he must live alone as he was “far too dangerous to live with others“. AL is now living quite happily with 3 others, and this has been the case since August 2012. They all understand each other’s personal space and are respectful of AL who ‘moved in first’.

The staff told us he would never “be able to go into the community unless he was in a car“. AL will go for walks with staff (on his terms). He is always more than happy to take staff by the hand and lead them to the ice-cream van where he will wait his turn before touching the picture of what he would like.

All of these things are huge achievements for AL in the development of his social and daily living skills and there is no way he would have progressed if he was still in the ATU. AL will always be unpredictable due to his diagnosis, however, I must say how proud I am of the staff team at Hand in Hands who continue to support him to further develop everyday.

AL After

The two photos in this post are before and after pictures of AL.

Look at the difference in his eyes, the unkempt, lost and scared man has gone and he is now a happy young dude who is being supported fully to make the most of his life as an equal in society.

Day 5: 107 stories from an assessment and treatment unit #107days

Yesterday we featured WiseGrannie who is a relatively new online voice to the discussions around care and support for people with learning disabilities. Today, we feature Mark Neary and his son Steven, both experts by (bitter/shameful/appalling) experience who have been at the front of the queue when it comes to generously sharing their knowledge and wisdom with others.

Steven + Mark Neary

Mark has a very personal reason for getting involved with #107days and #JusticeforLB:

Steven went away for 3 days respite on 30th December 2009. The following day I stupidly agreed to him being moved to an assessment and treatment unit. 3 days turned into 2 weeks and it finally took 358 days for him to be returned home. In his time in the hellhole, he was unlawfully deprived his Article 5 & Article 8 human rights. The scars are still there for him and me.

I’d like to keep assessment and treatment units in the news until they’re gone for good.

Mark has shared their experience in book form, if you’d like to read more then Get Steven Home and There’s Always Something or Other with Mr Neary provides the background. The titles alone speak volumes. For #107days Mark is sharing 107 stories from Steven’s time in an assessment and treatment unit. He started slightly ahead of us and so far has shared ten stories including Shoes and Beards and Bryan Ferry and Challenging Behaviour. I promise you will laugh and cry and shake your head in disbelief, it’s powerful stuff.

Just last week Mark has also shared two post on his personal blog that bear striking resemblance to LB’s family’s experience to date: A Smile, A Shrug, A Sob and A Stab and the follow up A Smile, A Shrug, A Sob and A Security Alert. It seems there is a pattern to what can be expected, suffice to say that sense prevailed in the end for Mark and Steven, and we take strength from them, and won’t be going anywhere until things change, permanently, for young dudes and dudettes, and until we have some Justice for LB.

We’re very grateful to Mark for sharing his and Steven’s experience with us through #107days. You can follow him on twitter here @MarkNeary1 and you can wish him a Happy Birthday for today too!!