Some Enabling Support Strategies: A Resource for Personal Assistants

Tom is now 19 and has, over the past month or so, suddenly realised a sense of his power as an adult.  A result of this is that he is thinking about and renegotiating his relationship with his PAs.  Tom is significantly affected by DMD-associated information-processing impairment and benefits from support in developing his independence skills.  The following is a resource, produced collaboratively by myself,  Tom, and his PAs, outlining strategies that PAs can use, which may be both supportive and enabling for young adults like Tom.  

Enabling Support Strategies: 

As a young adult, Tom is in control and taking the lead in his life.   At the same time, DMD, in Tom's case, can cause challenges such as:

•  Anxieties, worries, and difficulty managing uncertainty;
•  Difficulties with thinking about two or more things at once, such as getting together things to take when going out, planning a project, or considering actions and consequences in a busy situation;
• Difficulties switching from one’s own train of thought to the task in hand and transferring from one activity to another;
•  Needing longer to take in information, and difficulties with short-term memory recall;
•  Hypersensitivity to loud or sudden noise or strong smells.

 As Tom’s PA, you can support Tom by

•  Overseeing the big picture, especially in terms of planning, timekeeping, and safety.
•   Deferring to his preferences, unless there is a safety or time pressure reason not to.

Here are some key techniques for doing this:

Use a Client-Centred Approach

• When proposing, discussing, or considering a course of action, ask Tom’s opinion 
•       'Is it okay if we finish in around 5 minutes...?'
•       'I was wondering if...  What do you think?'
•       'What do you think of this idea?'
•       'There is something I wanted to run past you...'             

•  If you propose an idea, always offer a choice – but make it a closed choice between two options (see the section on supporting Tom to take in and recall information).

• Ask Tom how he likes things done and go with his preferences, unless there is a safety reason not to.  Don’t be defensive.
•       'Am I doing this the right way?'
•       'I'm sorry.  Tell me more about how you'd like this done.'           

• Be alongside him in his feelings.  Don't try to solve the problem or say it's all okay.
• Acknowledge - ‘I’m imagining that that’s a difficult feeling to be dealing with.’  
• Mirror - ‘I think I’m hearing that you feel like…  Would that be an accurate description?

  

Use Collaborative Problem Solving for Practical and Safety Issues

Discuss the problem/decision which needs sorting.  Invite Tom to think along with you, and together come up with possible solutions.  Do this ahead of time, in a quiet space.

• 'I'm thinking about safety when I'm driving.  I'd like to discuss some thoughts with you.'
• I'm thinking this might be a solution...  What do you think?'  

When deciding if an action is okay / not okay, Tom is used to thinking in terms of:

•  Does this action hurt me, or other people, or planet Earth?  If the answer is yes to any of these questions, don't do it.  If the answer is no to all of these questions, it's okay to do it.

This can be a helpful starting point for the collaborative problem-solving process. 

(The ‘you’re allowed / you’re not allowed’ or ‘your mum wants you to…’  ways of thinking aren’t applicable to adults and aren’t part of the collaborative problem solving approach.)

 

Empower Effective Self-Organisation

• Have checklists and support Tom to consult them before he goes out or embarks on a task.

• Have routines and always follow the same routines where possible

• Plan ahead - sudden setbacks can be very challenging for Tom.  Always check opening times / access etc before you set out.  Also anticipate possible setbacks and check out a potential Plan B with Tom.  Discuss this with Tom ahead of time, in a quiet place, and recall it with him just before you go out.  
• 'If the market doesn't have what you want, how about we go to Ozmens on the way back?'
• Allow time to transition to another activity.  Give Tom extra time to switch from one activity to another.  Additionally, sometimes people with DMD say no to an activity, not because they don't want to do it but because they are over-focussed on what they are doing now.  Give Tom time and phrase it as a question.
• How about you watch to the end of this episode of Buffy, and then we'll go out with Elsie?'

                

Support Tom to take in and recall information

• Get Tom's attention before you speak to him.  Mute any background noise.  Give information in short chunks.  Expect a 5-10 second delay before he responds to you.  If necessary, repeat the question / information in the same words.
• If you propose an idea, always offer a closed choice between two options (unless another option is clear, such as a choice of shirts that Tom can see).  Two closed choices gives Tom a manageable amount of information to take in and consider.  He still has the freedom to come up with his own alternative options.
• 'Are you thinking sandals or boots today?'
• Looking at the tea situation, there's a choice of the curry, or an omelette.  Any preferences?'
• If you and Tom discussed a plan yesterday / in the past, don’t assume that he will remember it.  Ahead of any situation where you need to put the plan into action, in a quiet space recall the plan / check that Tom recalls it.  Use roughly the same words that you used in the original discussion.

 

Minimise Sensory Issues

Be low-key, keep sensory things low-key.  Avoid loud or sudden noise or strong smells.

 

Reliant on Kindness? How Austerity is Undermining the Principle of the 2010 Equality Act

This post was first published at Open Democracy:
https://opendemocracy.net/uk/katherine-wedell/reliant-on-kindness-how-austerity-is-undermining-principle-of-2010-equality-act

Reliance on kindness, in law and in public services, has no place in a liberal democracy based on equal citizenship - but it's the consequence of austerity.

We rent a flat and our son Tom, aged fourteen, uses a powered wheelchair.  As anyone will know who has tried to rent a wheelchair accessible property, they are few and far between.  Happily, we found a suitable flat, but the parking space is very tight indeed for a wheelchair accessible van.  In fact, when the other spaces are filled, it’s actually impossible for Tom to get into the van and to get the van in or out.

I contacted the management company to ask about possible solutions to the parking problem, and, unwisely, suggested a solution.  They replied that the proposed solution was impossible, that I was aware when I rented the flat of what the parking arrangements were, and that they were unable to assist me any further in this matter.

Like many carers and people living with disability, I was weary from fighting other more important battles. So I just shelved for the time being the relatively small parking problem.

Then a new management company took over.  Our first contact with them was when my son’s wheelchair accidently caused some damage to the wall in the lobby.  I phoned, expecting to have to pay for the damage.  The new company could not have been nicer.  No, the site manager said, it was accidental damage; we’ll make good the wall and put some kick plates on it to improve the lobby for wheelchair users.  I also mentioned the parking problem.  Within 48 hours two site managers came to visit and saw a solution.  They asked about my son; one of them said that her son has autism and she is passionate about the rights of people living with disabilities.  They asked whether the flat and access to it was suitable, and whether there was anything else they could do.

The second company’s very helpful attitude transformed my week. It was a breath of fresh air.  It was also, only what the law requires. The 2010 Equality Act would have given us protection from the attitude of the first company, had I followed it up.  That company were legally required to be more helpful; required specifically by Section 20 of the 2010 Equality Act. [CM1]  The Act applies to any person or organisation providing goods, facilities or services to the public.

The 2010 Equality Act is a game changer, in our experience:  a line in the sand, a statement that people living with disabilities and difference are equal citizens; and that reliance on arbitrary acts of helpfulness or unhelpfulness is unacceptable.

Shortly after the parking episode, Tom took part in a Duke of Edinburgh Award camping trip, run by his school.  The afternoon before the trip the local authority school minibus provider phoned the school to say that one of the minibuses that the school was planning to use was broken down and not available. 

The consequence of this would be that one of the students who uses a wheelchair would be denied the educational opportunity of going on the trip.  Inclusion is fundamental to the school and it was unthinkable that a student would be excluded.  The deputy head, who had a pile of reports to write that evening before accompanying the students on the overnight camping trip the next day, spent two hours phoning round to locate another minibus, which he eventually managed to do. 

Why was the minibus broken down and no replacement available?  Because underfunding means the education service is relying on minibuses which are old and unreliable.

A second example, this time from the NHS.  Tom is taking a pioneering new genetic drug, that’s normally delivered to our house.  A glitch when we moved house recently meant that he urgently needed a new prescription from his consultant.

Problem – we discovered that the consultant was on holiday and there was no cover for him. Oh, and his secretary was on long-term sick leave, and there was no cover for her. 

After several frantic phone calls to various hospital departments, a registrar helped us, over and above her workload.  She phoned us back at 7pm, after her shift, and met us the next day, in between her appointments. 

Tom’s basic medical need was met was through the goodwill of a public sector employee prepared to do (more) unpaid overtime.  And this is an example from genetic medicine:  how can the UK be a world leader in developing genetic medicines if the NHS is so underfunded that it relies on goodwill to deliver pioneering treatments to patients?

So-called ‘austerity’ – in other words, funding cuts – means public service users are reliant on kindness to access services to which they are entitled.

Cameron’s ‘Big Society’ idea of 2010, “to help people to come together in their neighbourhoods to do good things”, coincided with 25% cuts to public services.  The net political message was that “doing good things” could plaster over the cuts in public service funding.  After 2013 Cameron no longer mentioned the Big Society but the idea continues in zombie form. Reliance on kindness appears to be the government’s answer to the delivery of public services.

The examples given here are small, everyday incidents – but incidents like these are happening across public services every day and they impact in two ways.

On a human level, they are an abuse both of service users and of conscientious public service workers, who know that if they do not put in extra help to compensate for the lack of funding in public services, then the people who rely on those services will lose out.  The next time we saw Tom’s consultant, a highly skilled and experienced doctor, he told us that cuts to administrative support had made his job so unmanageable that he had decided to take early retirement.  The human cost becomes an economic cost as well.

On a political level, incidents like these, across public services and every day, are undermining the principle of equal citizenship in public life.  The principle of the 2010 Equality Act also underpins access to public services.  Service users are entitled to public services on the basis of being equal citizens.  Reliance on kindness, in law and in public services, has no place in a liberal democracy based on equal citizenship.  The funding of public services should reflect that.

Paying for Budget Cuts and Outsourcing: Our Story of Special Needs Transport

This post was originally published at Open Democracy: https://www.opendemocracy.net/uk/katherine-wedell/it-s-vulnerable-who-pay-when-councils-outsource-personal-story-of-special-needs-

For several years, our son Tom travelled to and from his special needs school without incident in a minibus run by an outsourced company commissioned and paid by the County Council. One of the four students in the minibus had challenging behaviour, but he was young and still quite small, and the escort was able to manage his behaviour.

However, as this younger child grew bigger his challenging behaviour became more difficult to manage. Neither the driver nor the escort had any training at all in behaviour management. One driver had already quit the route because of this student’s behaviour.

One day in June, the student, let’s call him Barry, hit Tom in the stomach. Barry was not acting intentionally; his behaviour was related to his learning disability. It is likely that his challenging behaviour was exacerbated by going to school in a minibus – he should have had the calmness and predictability of lone transport. As Tom has Duchenne muscular dystrophy (DMD), the consequences of the assault could have been very serious, even fatal. We reported the incident to the local authority Special Educational Needs Officer and asked for the authority to provide lone transport for Tom, on the grounds of physical vulnerability caused by his DMD.

The local authority responded that the outsourced transport company had responsibility for safeguarding the students. We argued that the company had done everything within its power and that ultimately, the local authority, as a statutory public body which commissions and pays for school transport to special schools, had responsibility for safeguarding the students in the minibus.

The discussion with the local authority continued until the end of the school year. During this time, I was taking Tom to and from school myself. The local authority argued that they would consider lone transport for Tom only if there were no other alternatives. They changed the seating arrangements in the minibus, devised a different system for getting into and out of the bus, and decided that Barry should wear a Crelling harness, otherwise known as a ‘Houdini’ belt. They proposed that this arrangement should be tested for four weeks, starting in the Autumn term.

We, and Tom’s school, argued that the long-term use of a Houdini belt contravened accepted good practice in restraint and was inappropriate for a young person of the age that Barry now was. Also, given variations in the personnel staffing the bus, and their complete lack of training, we were concerned that ‘safe’ systems for seating arrangements and getting in and out of the bus would not be applied consistently. However, the trial period with the Houdini belt went ahead.

At the start of the Autumn term, another student joined the minibus. Let’s call this student Mandy. Mandy also had challenging behaviour. On the morning of the fourth day into the new term, when the minibus called for Tom, we got out of the house to see Mandy wrestling with the driver, who was trying in vain to get her to put her seat belt on. Barry was throwing soft toys around the bus. The escort, who had tried to calm Mandy and Barry, stood on the pavement. We watched a stuffed giraffe sail out of the open door of the minibus. I said ‘That’s it. That’s the end.’

We contacted the local authority. One option was for Tom to join another minibus route. For Tom’s safety, we could only agree to this if we had a guarantee from the local authority that the new route would not include children with challenging behaviour, neither now nor in the future.

The Special Educational Needs Officer who had dealt with the case in the summer term was now on long term sick leave. Junior staff were dealing with the issue. They didn’t appear to have direct contact with the council’s transport team – they didn’t know what the council’s procedures were for allocating students to routes and suggested that we, as parents, should talk to the transport team directly. Senior staff were then called in – staff who should have been spending their time and mental energy on the service as a whole, not on individual cases.

We discovered that minibus places were allocated according to where the children lived and did not take any account of challenging behaviour or physical vulnerability. This made the routes cheaper to run. The local authority had a system for gathering information about the students to give to the outsourced company, but this was haphazard and delivered months after the students had started using the minibus.

When it was clear that no minibus route could be guaranteed as safe for Tom, it then took the local authority three weeks to arrange lone transport: ten days to okay it and a further ten days to put the job out to tender. All this time, Tom was not going to school. The school complained to the authority that Tom was now officially a child missing out.

Eventually a local taxi company won the tender. In the first four days there were four different escorts, none of whom were trained or had any information about Tom. We supplied them with information ourselves. On the fourth day the transport arrived late and it was a black cab without proper wheelchair restraints. The driver said he had ‘had a phone call last night’ from the taxi company asking him to do this run. After further complaints to the authority Tom got one consistent driver and one consistent escort and a car with proper wheelchair restraints.

The authority told us that they would pay for lone transport just for one term. The Christmas holidays arrived with no word from the authority on what provision would be made for Tom in the new term. The first day of the spring term arrived and no transport turned up.

But by then we were already planning to leave: refugees to another authority, which does not outsource school transport and where the training and safety of drivers and escorts is backed by their membership of trade unions.

Let’s just summarise how in this case budget cuts and outsourcing to the lowest bidder led to a gaping hole in safeguarding.

First, the location of responsibility for safety was initially disputed between the local authority and the outsourced company. Was this because it was unclear, or because the local authority did not want to pay for the cost of safety? Or both?

Second, within the local authority, long term sick leave, absence not covered, delegation to junior staff, and senior staff diverted from their planning and overview work, speak of budget cuts leading to high work load, high stress, lack of adequate knowledge and understanding of accountability by some staff, breakdown of (already poor) lines of communication, lack of overview, and lack of adequate and pro-active monitoring of services.

Thirdly, it costs money to provide training in behaviour management and an allocation of transport places which takes account of challenging behaviour and physical vulnerability. In an unregulated market situation, no company which provides these safeguards can be the lowest bidder.

Fourthly, the local authority in this case tried to persist with an unsafe system, apparently in order to save money. The lack of safeguards puts at risk both the service users who need the transport and the workers staffing the minibus. God forbid that a young person with special needs and/or disabilities in this local authority, or a driver or escort, is killed on a school bus – but budget cuts and the policy of outsourcing to the lowest bidder mean that there are no safeguards which could prevent it.

Let us consider the larger political and economic choices which led to this situation. None of the individuals involved acted with deliberate malice or were out to exploit the situation to their own advantage. What we witnessed is the false economy and the injustice of massive budget cuts and the ‘marketisation’ of public services.

Competition is justified in terms of saving money. Outsourcing to the lowest bidder is the logical conclusion. But this situation creates very serious risks. Any one of those risks could end up costing the local authority huge amounts of money.

Competition is also justified in terms of getting value for money. But where there are massive budget cuts and a policy of outsourcing to the lowest bidder, competition is only a race to the bottom. For those who subscribe to this ideology, the question becomes how low you can go in the service you provide. The gutter press demonise those who are reliant on public services. It is a slippery slope to attitudes which are Victorian or worse.

Monitoring is sidelined. You don’t want to look too closely at the quality of a service if you are committed to outsourcing to the lowest bidder. The focus is on competition and marketisation, not on providing an adequate or coherent service. The market decides. The local authority remains legally responsible for the service, but its provision and quality move outside their control. Those local authority workers who can’t stand what is happening whistle-blow to deaf ears and/or go on long term sick leave, retire early, leave, or doggedly try to work with the situation for the sake of service users.

What happened to the families living in Grenfell Tower has blown open the false economy and the injustice of massive budget cuts and the ruthless competitive outsourcing of public services. The risks are risks to people. In this case, the risks were borne by low-paid workers and young people, like our son, living with disabilities. Public services cannot be run adequately in this way and there is no moral future for a society which treats some of its members as collateral damage.

A Sense of Value

Recently I had the wonderful experience of hearing a parent truly recognising and valuing her daughter’s qualities and talents, and supporting her daughter to use those qualities and talents.  It was at the Bat Mitzvah party of the young woman in question – let’s call her Shona.  In her speech, Shona’s mum Rachel didn’t gush about Shona’s general wonderfulness; neither did she offer Shona helpful advice.  She did pick out specific qualities and talents which Shona has and gave examples of Shona using them.  Shona’s courage and strong sense of self, standing up to playground bullies who picked on her because she has two mums.  Shona’s sense of fun and adventure as a skateboard enthusiast.  How Shona is caring and generous to her younger sister and to her friends.  Rachel gave some other examples as well – but the key point is that her words were enabling Shona to recognise and value her inner resources and to use them in years to come.

Tom turned thirteen in December and a friend who is Jewish told me which section of the Torah is read the week of his birthday.  It turns out it’s the story of Jacob’s ladder:  while on a journey, Jacob lies down to sleep, using a stone for a pillow.  He dreams of a ladder between heaven and earth, with angels ascending and descending, and he dreams that God then speaks to him. 

Jacob is clearly not a rich or apparently significant person – he uses a stone for a pillow – yet the passage is all about his significance and the significance of all people.  In Jacob’s dream, he and we are not just down in the dust of the earth, we are connected to heaven and we are blessed.

What does all this mean for me as the parent of a young person living with Duchenne muscular dystrophy?

Like many other young people living with DMD, Tom is painfully aware of what he can’t do that other people can do.  A few years ago we saw his self-esteem taking a downward turn as he became more aware of his condition.  On the advice of a psychologist, we asked his grandparents and some other people close to him to write down what they knew about him – to put the good things.  Reading and thinking about those things really helped Tom to recognise, value, and to use his qualities and talents.  It has hugely strengthened his sense of self-worth. 

As a parent I can support that by noticing, just in the day-to-day course of things, what Tom is good at and does well, and telling him. 

Ryan Worth is a young man who has clearly grown up valuing his abilities.  He now wants to study history and politics at university and to contribute his education and talents to society as an MP.  Ryan is also living with Duchenne muscular dystrophy and needs 24/7 care.  Because of cuts to social care in his local authority, Ryan has to share a care package with his brother. https://www.theguardian.com/society/2017/jan/08/the-crisis-of-disabled-millennials-it-feels-hopeless. Simply for this reason, Ryan is currently not able to take up his place at university.

Our government has identified four ‘British values’:  democracy, the rule of law, individual liberty, and mutual respect and toleration for those of different faiths and beliefs and those of no faith. 

Does ‘individual liberty’ not apply to all, including those living with disabilities who need social care?  Does ‘mutual respect’ only apply to faith, or does it apply to all difference, including physical difference?

Current cuts to social care are so severe that they cross a line:  the line that divides seeing individuals as significant, with qualities and talents to contribute, from seeing them as care units to manage as economically as possible.  To cross this line is to move into very dangerous territory.

We need to actively resist the idea that the current cuts in care for people living with disabilities are acceptable or inevitable.  Not just as parents and family members, but as voters, citizens, and media and social media users we need to recognise the significance of every person’s qualities and talents and their right to develop and use those talents. 

The mental health of carers

Becoming a carer changes  your life and can have a significant impact on your mental health.  Much has been written about the challenges faced by carers and how to cope with those challenges.  (Mind and the Carers Trust have helpful information on their websites (mind.org.uk/information-support/helping-someone-else/carers-friends-and-family-a-guide-to-coping; carers.org  ).   I would like to write here about some of the ways I have coped mentally with becoming the main carer of a young person living with Duchenne muscular dystrophy.  By 'care work' I don't mean regular parenting; I mean all the work to do with DMD over and above regular parenting - the personal care, the planning and organising, the meetings and appointments. 

I do not claim to be an expert or a professional, and would advise anyone experiencing mental health issues as a carer to get professional help.  Here I just speak from my experience.  The following are the three main strategies I developed, ways of coping that I wish I had known about when DMD first came into our lives.

Getting a Filing Cabinet
Tom’s diagnosis was an emotional bombshell.  In the weeks and months that followed we also had to get our heads around a huge amount of information and paperwork.  It was a vertical learning curve to find out about the condition, what we needed to do to manage it, and which professionals did what.

Getting a filing cabinet helped a lot.  In practical terms it helped to have somewhere to put the paperwork and to have somewhere we could find things easily.

Emotionally it helped.  It enabled me to separate out in my mind the many different things we were dealing with.  It helped me to feel more in control.  Filing helped to calm my mind.   I think it helped to have somewhere to ‘put’ DMD – it was a way of getting it out of my head.  I could close the filing drawer and feel I had some mental space away from this terrible condition that threatened to engulf our entire lives.  It helped to separate DMD from my relationship with Tom himself.

A Weekly Day Off

For a year after Tom’s diagnosis in 2008, as his main carer I coped by manically sorting out and doing what needed to be done.  At the same time I carried on with my part-time job. Then in June 2009, like a cartoon character whose little legs have kept running even after going off a cliff, I inwardly plummeted.  I needed time to take in the emotional impact of the diagnosis, as well as time to deal with the practical things.  After several months of struggle I gave up my job. 

Along with work I lost structure in my week and a focus other than DMD and care work.  I became a slave to the Duchenne to-do list.  Every day was household drudgery, gritty organising of Duchenne-related things, and caring for our son.  2010 was quite dire.  There was no let-up and I felt depressed and empty. 

In 2011 I decided to change my approach.  I began to treat my care work like a job, and have a day off a week.  This approach was – and is – great.  I'm simply unavailable on Fridays for meetings or appointments.  On that day, I am allowed to do anything, as long as it is not on the to-do list. My Fridays generally involve walking in beautiful woods, watching some nice TV programme and/or reading a good book.  There is always cake. 

It has made a massive difference to my mental health to have a regular break and to look forward to something lovely every week.  Since 2011 I have been able to return to part time work as well.

The Quadruple Diamond

It is a challenge to keep track of everything I need to do as the main carer of a young person living with DMD.  Until recently I have woken up every morning (except Fridays) feeling overwhelmed with the sheer number and variety of small tasks that need doing. 

When I was growing up in Birmingham, there was a big advert on a railway bridge near our house for ‘Double Diamond’ beer.  And Buddhists speak of the ‘Triple Gem’ of the Buddha, the Sangha, or community, and the Dharma, or teaching.

I have decided that my care work is the ‘Quadruple Diamond’.  Tasks fall into one of four categories:  those to do with Tom’s physical wellbeing; those to do with his education; those to do with social and emotional issues, independence and self-esteem; and those to do with training and working with his assistance dog.

Instead of an endless to-do list, I think of the day-to-day tasks in these four groups.  Every three months, I write down, inside four interlocking diamond shapes on a sheet of paper, the longer term issues and what needs doing.  I keep the sheets in a ring binder.   

Categorising and recording my care work in this way helps me not just to keep track of what needs doing but also to keep in focus the purpose and the results of my work.  I can see what has been achieved over a given period of time. 

And the idea of the Quadruple Diamond helps to remind me that at the heart of my care work is a great treasure:  the health, wellbeing, and flourishing of our beautiful son Tom. 

Last of the Summer

Last week I went to the Greatest Teashop That Can Be Imagined:  the Abbey Tearoom in Dorchester on Thames.  In a low beamed twelfth century room, with late summer sun dappling in through the trees outside, two tables are laid with cakes (and scones and buttered teabreads).  Around this cake-shrine the tea takers worship. At the teashop I met a number of other devotees, all in sombre mood:  it was the last Sunday in September, the last day of summer before the local volunteer cake-bakers who run the teashop close up business for the winter.

The previous day I had seen Tom crawling across soft matting to the ball pit at an activity centre where he used to play.  Tom is lucky:  he is nearly thirteen and, while weak, he is still walking.  For the last two years and nine months he has been on the Translarna trial.  Translarna has slowed down the loss of muscle and helped to maintain Tom's upper body strength and stamina.

When Tom loses ambulation, he will no longer be eligible to take Translarna.  It only has approval for people who can walk.  This is because the primary clinical trial test criterion was a six minute walk test.  Not because the drug won't continue to support upper body strength and function.  The research did collect data on this as secondary clinical endpoints and anecdotal evidence also points to the drug's effectiveness.  

This is no cream cake, this is no tearoom.  It's not acceptable that new drugs simply close up shop for those who can't walk.  Like everyone who is currently on a clinical trial which relies primarily on the six minute walk test, Tom faces not only the loss of ambulation but the actual withdrawal of a drug for Duchenne.  The drug we were waiting and hoping for for five years.  The only drug that currently exists for Tom.

Everyone affected by Duchenne has their own story of the devastating impact of the lack of clinical trials for non-ambulant people.   This is Tom's story.  Carl 'Action' Tilson campaigned to his dying day to be included in clinical trials.  And I remember Stuart Wickison's words: 'It's too late for me'.

Thanks to Nick Catlin for his recent article on the limitations of the six minute walk test http://nickcatlin.org/2016/09/21/goodbye-to-the-6mwt.  Thanks to Jack and Aaron Ebanks for their campaigning trip from Bristol to Birmingham this summer to highlight the need for clinical trials for non-ambulant people.  Thanks to all the charities and clinicians for their current work to develop and roll out standardised upper body strength and functionality tests and the use of MRI as primary measures of clinical outcomes in future clinical trials.

Monkey World

I have an anger management issue.  I am asking myself where I can put these feelings of anger.

To cut a long story short, it's not Duchenne that sets me off.  It's dealing with a world that doesn't get it.  In the last three weeks, it's been: the officious volunteer at the Chiltern Open Air Museum, a venue that actually has good access, greeting us with a list of what Tom would not be able to access as a wheelchair user; it's my mum being charged £25 for a £10 taxi journey because we had a wheelchair accessible vehicle; it's feeling 'told off' by a restaurant owner who got very flustered when we arrived with wheelchair and assistance dog;  it's the unnecessary step from plane to corridor when we came back to Heathrow from our holiday; it's the 'wheelchair space' on the Heathrow - Oxford bus, precarious to get up to and sit in, too small, secured only at the back, without seatbelt, and taking twenty minutes to put together by the (very nice) driver who needed to consult the instruction manual.  It's the accumulated effect of examples like this going back ten years.  When we are about to celebrate the 2016 Paralympics, why is accessibility still not routine in much of the UK?

So how can I deal with my anger?  To carry it around eats me up, and fighting every battle is obviously not possible.  Cognitive behavioural therapy had me writing a diary of every time I got angry.  A 'mindfulness for carers' course had me observing my breath and sitting by a river watching the feelings flow by.  But I still want to thump someone.

'Let go and let God' is another option.  I'm not a believer but I have a good imagination.  What kind of god could I give my anger to?  Maybe the Narnia route, sitting by a stream in Aslan's country?

Then the image came into my mind of a tourist attraction in Dorset that I went to a couple of years ago:  Monkey World.  It's a refuge for primates rescued from abuse.  A wonderful place, with big enclosures and deeply caring staff.  I remember the gibbons silhouetted in their high tree top home, and how the children's playground was a lot like the chimpanzee enclosure.  The traumatised residents of Monkey World were accepted there as themselves, calmed, reassured, and eventually brought back to physical and mental health, their natural energy and grace.  I imagine such enclosures and such care for my own anger, fear, anxiety, frustration, and grief.  The God to whom I could give my anger would be like a keeper at Monkey World.