This post is about access to appropriate health services for our loved ones.
Our sons and daughters, despite their challenges and disabilities, all have a right to have their health needs met just like anyone else. It seems obvious that if someone finds it difficult or impossible to communicate their needs we must all take extra care to make sure that they are well and not in any pain or discomfort. Why is that sometimes so damn hard to achieve?
This week is about our long-suffering families struggling to get justice for their sons and daughters as a result of the appalling treatment that their children have suffered, it’s not about me. For the first time this week though I have personal experience to share about this topic so I hope you will forgive me for indulging in a little personal reflection about my family’s own distress and trauma. This experience is not directly associated with ATUs but I think does highlight some common issues.
Over the years my wife, son and I have seen the NHS at its very best and at its not at all good. During a hospital stay in 2007 as a result of sustained seizure activity lasting several days I witnessed the wonderful doctors and nurses save my son’s life, though I wouldn’t recommend the experience of witnessing the intervention of the hospital’s crash team which to date has been the most frightening and traumatic moment of my life. This was followed by gut wrenching dreadful anxiety over several days in intensive care. The intensive care team were brilliant too, teamwork at its finest.
In contrast I also know from personal experience how difficult it can be trying to access both acute and ongoing help from heath professionals. This time it was due to another chronic health issue and my struggle eventually went as far as the Court of Protection to get my son appropriate investigation and treatment. This one eventually resulted in a blue light trip to hospital too. From his early teens my son had dreadful problems with constipation which though treated with occasional laxatives were not effectively addressed despite my repeated please for help.
As he could not understand, consent to treatment or cooperate with investigations his needs were not dealt with and the failure of professionals to advocate for him would eventually cause damage to his bowel. He suffered years of discomfort which could have been prevented, in fact he could have died, but it seems my opinion as a parent was not significant enough to trigger active investigations and treatment in his best interests when he needed it.
Imagine being in pain or discomfort and not being able to explain how you are feeling. It’s hardly surprising that untreated health issues and the resulting escalating challenging behaviour at home (and at school) could easily result in crisis. We saw more and more of this through my son’s teenage years, With the benefit of hindsight there is little doubt that some of these behaviours were being caused by his unmet health needs.
Growing up
Many young people will grow up having their health needs well understood, others may not. Families need Health professionals to work together to diagnose and treat everyone with complex needs carefully to prevent unnecessary suffering. (Why do I even need to say that). Depending upon the individual this can mean involving a number of people, for example: the GP, a primary care liaison nurse, community LD Team, community dentist, specialist teams E.G. continence, SaLT and OT, optician, audiologist, hospital liaison nurse and consultants not just to diagnose and treat specific problems but to help manage the continuing needs of the patient competently. Part of this work must be to create, for example, a communication passport (about me), behaviour support plan and a comprehensive healthcare plan for obvious reasons. (Don’t forget the option of a personal health budget for some of this if it might help get things done)
The dreaded ATU
For anyone in crisis suddenly finding themselves in a strange place with strange people at a time of high anxiety and distress will probably be the worst and most frightening feeling that they have ever experienced. It comes as no surprise that powerful drugs will often be prescribed to try and calm the person down. I keep saying this but please, we have to focus on and treat the causes of behaviour not just faff about, (technical ‘expert by experience’ term), by just responding to the presenting symptoms.
I know from my own limited experience with care and treatment reviews that the ATU staff I have met are working hard to support their patients sometimes in very difficult circumstances and work closely with review teams to address any issues raised. However it is also clear, to me at least, in listening to families experiences generally that there are many examples of poor practice that need addressing urgently. I am referring to the use of sanctions. We have to stop sanctions being used as a form of punishment (Unless you want to give the patient a mental health issue where there wasn’t one previously) by using restraint, withdrawing contact with family members or further restricting activities or personal freedoms within the regulated environment. Clearly behaviour has consequences but punishment must never be used as a means to try and modify behaviour. I believe we have heard evidence from our families about this and if it is proven to be happening we need an urgent inquiry and steps taken to stamp it out.
What needs to happen
Health and wellbeing needs to be the number one priority for anyone with complex needs whatever the care setting. This is another example of the importance of the team around the person. We need far more training for medical professionals about making reasonable adjustments and how to effectively advocate for their patients using the mental capacity act. Services and professionals need to evolve from their traditional silo working ethos and embrace the multi-disciplinary approach.
Dear NHS, above all for pity’s sake listen to parents, they are the experts by experience. If parents think there is something wrong then there is probably something wrong. Just because your previous experience deems it unlikely still listen to the parents. Routine oversight as agreed in the healthcare plan must be maintained including all routine checks and investigations if you expect your patient to stay happy and healthy. Call me optimistic but we need many more Fab LD and liaison nurses to help make healthcare accessible. If you wouldn’t mind, a LD lead in each GP Practice would help enormously.
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