The NHS putting a firewall around failure

As an NHS supporter it pains me to offer any criticism.

However after 7 months of my daughter being in a mental hospital (when she is not even described as unwell by her doctors),  I am obviously a tad questioning what is going on. 

My daughter has a Learning Disability, she is not mentally ill.  She wants to live independently just like the rest of us but in her case that means with support. She has heard people talking about independent living for 4 years but she has never been provided with it. 

She is unhappy. 


I am trying to move things forwards - while at the same time looking after her at home as much as possible (she thinks that by refusing to be at home Social Care will house her, sometimes she gets so unhappy she comes home), being here for her, and doing my full time job.

On behalf of her I have asked for digital copies of my daughter's meeting notes (multi-disciplinary meetings with NHS and Social Care staff in attendance that I have been present at, and have already seen some written notes for, so really I'm just asking for copies of things I have already seen about meetings that I was present in). 

This request for digital copies is treated as a complaint by the NHS Trust 'legal department'- meaning that the very simple notes of conversations will not be forwarded until a complaints procedure is completed that takes x months. It has been pointed out that no complaint has actually been made by me or anyone. (I don't know what x months is).

When I attend the next meeting I receive the patronising lecture from the NHS Psychiatrist about records being confidential (the point that it is actually my daughter the patient that is asking for the records doesn't register a reply, and no-one backs me up, it is one of those regular quiet moments in these meetings before they 'move on' in order to be 'positive', leaving me to feel that I haven't been 'positive'). Asking questions is not positive. Everyone look at their shoes now....shhhh.

Social Care reply that my daughter has not given consent for the documents to be produced - ignoring that it is actually her asking for them to be given to me.  Everyone looks at their shoes. Nobody says a word. Shhhh.

Why don't they supply these things?

Could it be that it is because they know that after months and years I have been driven to the point that I want a solicitor to look at them to establish whether they have managed her case properly and that her statutory rights have been adhered to? It has been SEVEN MONTHS in hospital….and previously it was EIGHT MONTHS and the time before that it was X MONTHS and the time before that it was Y MONTHS. X was 4, Y was 3 in these cases.

Not ill. In mental hospital.

Emails are not replied to - pretty much consistently.  When you ask why this is the case you are told it is not policy to reply to emails 'due to confidentiality'. They used to reply to emails, fairly routinely. But now they have decided not to.

I ask for a copy of the policy about emails. Negative dad. Bad negative dad. 


I am then told that this request is also being dealt with as a complaint (again pointed out that it isn't) - meaning that a reply or policy will not be supplied until a complaints procedure is completed that takes x months. I don't know what x is.

You ask negative questions questions like - "who is actually in charge of my daughter's case?", "why has an assessment not been done?", "why is she here?", "if it is because Social Care are not providing a meaningful alternative to her being in hospital why don't you get the Director of the Health Trust to write to the Director of Social Services to say it is not good for someone with Learning Disabilty to effectively live in hospital?", "do you think that it is ok for her to be here (you miss out the words - becoming institutionalised, and more service dependent)?". Quiet moments ensue, and we move on, to be 'positive'. shhhhh. Look at your shoes everyone.

Whereas one might think that those charged with health might be concerned or supportive of your questions about the quite evidently broken Social Care system that appears to be blocking a positive outcome and costing an NHS bed, the worst part is when you realise that there is a tacit collusion between NHS and Social Care to not criticise the failings that are occurring.

It is almost as if the staff of each service are so pissed off (with the systems they work in) that they (counter-intuitively) defend each other, as if it is a personal compact, because they feel personally complicit and 'blamed'.  Though the other thing that is very obvious is that junior staff must never criticise (or offer any opinion) on senior staff decisions - this is the poorest model for operation that I can think of.

The atmosphere of the meetings is utterly unchallenging of systemic failings. So when the Social Worker doesn't turn up for a monthly 'multi-disciplinary' meeting, so meaning that a key 'partner' is not in the room for two months, she is not even asked 'why not', 'where were you' at the next meeting - chaired by the NHS Psychiatrist (she of the let's be positive meme).

The meetings are called and billed as meetings to make plans but are in fact just reporting sessions, where each party (if they turn up) reports on what has happened (and in the case of making progress with solutions - what hasn't). More months go by.

You sit there feeling that you are being 'negative' when you point out that nothing has happened since the last meeting a month ago - your daughter is STILL an in-patient in a mental hospital when she isn't mentally ill - and that you find yourself forgiving the staff because you know that they are under-resourced, but actually the irony is that robustly discussing matters in order to find solutions is NOT actually a resourcing issue at all, it is a problem of no-one being decisive and doing everything you can to get the best outcome for the patient; no-one standing up and being counted.  It is a problem of NO-ONE BEING IN CHARGE.

The problem has become that no-one is challenging the status quo, services are making excuses for each other.

One senior voice (NHS) today told me that x solution (a bespoke service solution) can't be delivered by Social Care for everyone, so don't even ask for it in your case - when in fact I have been told that the very solution we have discussed HAS been provided for others, locally, by the service provider who was in the meeting earlier.

He was clearly saying you are being too demanding, and in that moment forgiving the abject failure of Social Care to provide the solution, in effect suggesting that I and my daughter should just accept the situation.  He is also misinforming us, in order to suppress us.  He probably doesn't even notice that he is doing it, as with all of them they are nice enough people.

Between them the services are creating a firewall around failure.

In the meeting today the distressed ‘patient’ (not ill, but referred to as a patient) clearly said "it is as if you don't care". She was assured that everyone does.

#noteneough

Mental Health Awareness Day | BREXIT | Boogie Woogie dancing

I sometimes look very angry when I attend the MDT meetings for my daughter.  She is Learning Disabled and has been repeatedly Sectioned under the Mental Health Act – currently a Section 3 order that I have had to take legal advice to even question (and I thank national MENCAP for very essential advisory support). 

MDT is a ‘Multi-Disciplinary Team’ meeting – NHS staff from the ward, Psychiatrists, Psychologists, Social Workers etc. I have been to so many, I speak the lingo.

Sectioned means being held in a secure ward. MHA Section 3 is a 6 month order.  You are not free to leave, your family can not take you home, or even off the ward to the café without the written permission of the Psychiatrist.  

The Psychiatrist is usually not available on week-ends so all leave has to be pre-planned rather than responsive to situation or need (so if your daughter calls to say can we just go out because I feel like a bit of time-out and it would help me...you can't). The Psychiatrist prescribes anti-psychotic drugs that ‘moderate her moods’; she is not psychotic, she is not actually even ill. She is sometimes restrained ie physically held.  She says has been held face down and injected sometimes.  

My daughter is not mentally ill. This is an accepted fact by the Psychiatrist and the other staff. She does get anxious, stressed, depressed, which are all mental health issues but not such that she should be hospitalised. Her stress is related to her frustration about her disability – she is not really free to make decisions about her life in the way that others of her age (21) make, including making the decision to move out from living with her middle-aged dad. Her chances of getting a job are minimal. Friendships are hard to form, young people are busy with their lives and social relationships and sexual growth, learning disabled friends are not so easy….

This is all stressful for her. Most of the time she is lovely, people like her, she is charming and really quite able. Sometimes she boils over and runs off or screams and shouts for hours, or goes into a black mood and refuses to eat until she becomes ill. Because she is vulnerable I can not just let her run off so the police are called and they take her to the hospital under their Section 136 powers – and if she is not amenable to coming home the NHS Section her as a ‘place of safety’ issue.

She has been asking to live somewhere independently (with support) for some time but the Social Services have nothing available. So she gets stressed and anxious and depressed. She can be quite difficult to manage when she is these things. Even when she isn’t she is quite demanding and needy. This is not her fault – she just needs a lot of support; she has a disability, a mental disability, she got dealt some cards that are not easy. Her disability is a strange mix of bright insightful loving empathetic daughter and non-cognitive vulnerability - as we walk out into the bright sun she turns to me and says "do i need sunglasses dad?", she nearly always asks this. In the absence of enough support she sometimes becomes more and more difficult, this is very stressful to live with. When she boils over it really ruins your day, weekend, week, month…all depending on how long it goes on for.

I think that when I become angry in MDT meetings I look like I have Mental Health issues myself.  When her destabilised moods that are the result of her understandable dissatisfaction with her lot go on for weeks I do find that I go from stressed to depressed – as a strong person in a position of responsibility professionally I find this difficult to even admit to. Ordinary things become less joyful, work becomes a demand rather than the wonderful thing it is (I am privileged to have a job that is rewarding and brilliant), holding it together becomes a challenge.

What makes me angry is that much of what is happening is not impossible to solve. Everyone in the room knows it. It is just totally, utterly, despicably under-resourced.

Off the record the staff talk to me. I apologise for seeming to be angry with them. It is clear from all the staff that this is an endemic issue, they are fire-fighting rather than being the long-term solution that they wish to be and that they signed up to. It is also clear that we are an average case, that this has become the norm.

We fail our people – including our disabled people - so badly that they become Mental Health patients because the education system, the social care system, the NHS, the economy, is simply not set up for building a better and caring society. The economic system is about winning and competition, promoting wealth and success, and if you are not capable of being part of the competitive system the statutory services are simply a net to catch the failures - and the net is full of holes.

And then we come to the current obsessions – BREXIT, taking our country back, populism, nationalism.

And I think – what has this political jive and Kuenssberg ego dance and Daily Mail quick step and Farage goose step got to do with how we care for our people? The DJ has filled the room full of smoke and we are fed by the drug of the nation – TV – and the promise that a wealthier country (or a wealthier small proportion of it) will somehow change the groove to a conga chain where we all benefit in a mutual drunken bounce-fest. What utter foolish nonsense, the club is owned by people who make Peter Stringfellow look like an emancipated feminist who is only in the business to make people happy and doesn’t care about personal benefit a jot. Does anyone really believe it?

Europe doesn’t stop us from looking after people. Europe doesn’t make us ignore our ill, our mental health issues, our disabled. 

We do.