How it stands right now

It has been over a month since I met with senior members of the health team. I met with them at short notice in order to solve the situation of my son not having accessible health support. It solved nothing or hasn’t done and at the same time ‘they’ haven’t done what they said they would. Not any of it.

When I mention the lack of accessibility, that remains as a consequence of requesting a reassessment of my son’s needs 3 years ago. A part of which they conducted a review via a DST document. They messed up the first one and made me wait excessively for another meeting to take place. Much unfairness took place at the final one. The first one was a farce and so was the response I got from the service.

Finally, it was set-up to fail my son and his health needs by professionals making scoring decisions on the document when they weren’t even slightly familiar with my son or his disabilities and case. One ‘professional’ scoring for health left during the meeting. I believe this nurse was very obviously drafted in to do a job on my son which was to ensure he didn’t get full continuing health care.

And I was expected to ‘work with him’ afterward.

The same goes for the Continuing health care nurse assessor who was also making decisions after never even meeting my son. It was he who over-rode the whole decision making whilst at the same time doing my son an actual dis-service.

The ex-social worker and his manager did very little to get this situation overturned.

From it all, I never received one single written explanation of the decision from any of the professionals involved with it. It’s pretty much a poor show from the learning disability service who are only really there in name only. They don’t actually include my son in support from the service even though he is on the books of certain professionals and probably on the books of professionals I don’t even know of as yet.

I have been told, a nurse is allocated but she has only been ‘in touch’ on a withheld phone number, to arrange a 117 meeting…and she couldn’t do that properly. I turned up to it to find no-one in attendance and that was almost 2 months ago. I have not had any follow-up from her or her apology or her explanation and absolutely no further arrangements have been made or in the process, to resolve this.

Possibly, it could turn out to be an end of month syndrome…last port of call for the month….or more than likely it will be dragged out until after the Easter bunny makes an appearance.

Welcome to a learning disability service who are too rude and overpaid, around about now, to be considerate enough to exercise their duty of care to a client who is my son actually and he has learning disability…as well as uncontrolled seizures and autism.

They think it’s perfectly fine to ignore him…as if he’s not even worthy of ‘being a client’ of the service, judging on the actions of individual employees of that service and they think they are entitled to carry on with this. Obviously, they do as he is still not getting any services from the learning disability team and he’s not an ordinary client. He is a client in fact on 117 aftercare and they have chosen that for him, and for him to remain on it.

That was the decision taken by both health and social services…and made behind my back at the time, in the last few years. Regularly they ‘quote the costs of it’ to me and to any other organisation, who has ever become involved. More especially, when dealing with a case on his behalf. I have had all the quoting which has been read as a Riot Act, virtually every time I seek to gain justice for the lack of services that aren’t provided.

That fact, they pay paid carers just £9.00 an hour is never brought into the equation. The fact, they use me as an unpaid version of ‘the package’ also is never mentioned. Nor is it ever mentioned that it saves them copious amounts of funding which they would have to pay without my commitment.

Social services have even gone to the extremes of threatening me to do unpaid care. I would be ‘abandoning’ if I refused to do it…apparently. Not that I would want to refuse if it was not for the fact of an unlivable income which they have had every opportunity to resolve and they have not taken that opportunity even though I have applied for assistance and consideration of exceptional circumstance, some 3 years ago now.

Unpaid carers it seems, and according to ‘sod’s law’ which is administered by the likes of these types of professionals, is the way forward to resolve issues of unpaid care and carers who are ‘rebelling’ against its force. Then is the kangaroo Courts according to sod’s law itself. Of course, those administering this are encouraged to do so by their not so learned managers.

It is not this scaremongering that keeps me actually caring. I don’t do it for their benefit I actually do it for my son. They couldn’t actually do ‘sod all’ if I fully refused to do it and I never have refused either.

I did say as they have a kangaroo court ruling, that apparently no-one gets paid who lives in the same household, that I could move out and satisfy ‘the rules’. That is when the threats came about at the time of ‘we would consider’ you are abandoning. How exactly though as I would be coming back to care, if I chose that option.

To be fair, it was a stupid threat made by a social worker at the time who called himself ‘we’. But it goes to show exactly the forms of control used by the services, either individually or together. Then the end result was the social worker bailing out, ejecting from duty last month and officially ridding his own ‘duty of care’ in doing so.

I consider he’s moved house, so to speak, so in the same respect he’s abandoned the ship. This is now a problem for all future social workers who like him will do nothing, judging on my experience of that ‘service’ and in return, they will get nothing either. That’s how it is, as there’s only so much of a wild goose chase anyone could actually take.

Besides that, I have been awaiting an outcome to a meeting with two managers for over a month. A so-called nurse who’s supposed to be allocated to arrange another meeting but has taken nearly 2 months and counting to contact me and I have a number of outstanding issues which should have been sorted out years ago and one that’s been outstanding for 11 months.

I have added another ‘meet and greet’ camera and also replaced one. In preparation, towards the next installment of my home security which I am in no doubt will come in very useful, as all meetings will be taking place at my home from now onwards.


The same goes for the Continuing health care nurse assessor who was also making decisions after never even meeting my son. It was he who over-rode the whole decision making whilst at the same time doing my son an actual dis-service.

Par for the course … first stage and … NOT BY THE BOOK !

Main thread … nowadays , I just whistle it up :

After so many failings of “officials” whose role is supposed to be to implement legislation, I honestly think that there needs to be some sort of “fighting fund” set up because the current complaint systems just aren’t working. No one seems to realise the personal implications of an ONGOING problem.

Community “care” investigations should be resolved within a set time frame, maybe a month or two max? Instead, the complaint system seems more appropriate for a faulty electrical item, not people’s lives.

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Hello and welcome!

I concur fully. I am still waiting for a new physiotherapist. I emailed the week after Christmas to ask about sessions for my caree. No response yet. I am going to chase things up tomorrow morning. I will phone not email however.

This is why I don’t always trust people. In early January, I emailed someone at the council to arrange a meeting to discuss care and support for my caree and us. No reply yet even though I sent them a follow up email last Friday. Again I will harass them now. Good for you! I always take notes at meetings.

This is the deal Chris, it’s a joint solutions package funded by both social care and health. I applied for full continuing health the checklist is now called a DST (decision support tool). He got part-funding which means social care is the organisation who is responsible for reassessing. In 2013 they did a terrible job which had go to the ombudsman. To cut a long story short they came out and regardless of his needs, cut the care into less than half. Health in 2012 at a time where they’d removed his respite at one of their specialist units, on the basis of they couldn’t manage, opted to apply a verbal ‘he has no health needs’ and chucked him over to social care. Since then regardless of the fact health had to give part-funding social care has always been the ones responsible for reassessing…and they haven’t done so. Social care makes it up as they go along…they told an ombudsman that my son’s seizures are behavioral and not part of his epilepsy. Clearly ridiculous I know, however, a recent ombudsman used this in her ‘findings’ in a final decision. The statement is factually incorrect but it had no bearing on her writing it in her decision.

Hiya Bowlingbun, It certainly is a shambles of a complaints system. They sometimes don’t respond at all and there’s no longer any independent body overseeing it. Once a matter is answered, just the once, whether it be a proper answer or not, there appears to be no stage two. The time frame for Nhs complaints is endless and social care doesn’t allow the complaint system to be used whatsoever most of the time and by doing this they are creating an ombudsman to refuse cases as being out of time.

I have an advocate at the moment Chris and after a few months of writing a few lines to them, she is starting to look like she’s hampering any progress and in fact assisting the services more so. Even told me to email them myself despite the fact they never respond at all.

Hiya Thara, I find they ignore me in all forms of communication and it’s been going on for years. My son has no health support other than the GP. She wrote to them and has gone quiet about it. Right now my son has no specialist support, he’s seizuring many times a day, shaking constantly and terrified to leave the house in case he can’t control a seizure coming. He has TLE. He has said ‘he can’t cope with it’ meaning he can’t cope with how the seizures affect him (and it’s really awful). He’s anxious and not in a generalized way. He screams all night most nights and wails loudly. It’s a nightmare for him and his condition is just simply ignored by the health team. He’s never had an epilepsy nurse and I have been constantly blocked (by his psychiatrist) from getting him a neurologist. That’s been going on for 16 years. Now, amazingly enough, the psychiatrist wants a second opinion from a neurologist in what seems to be a set-up. Basically, this professional had forgotten an MRI scan revealed TLE, in 2004…so actually there is no ‘second opinion’ to be gained at all. I could write a book on it I really could. To be fair, the psychiatrist is one flew past a cuckoo’s nest, himself.


So frightening for your son to have so many seizures.

I cant imagine how hard this is all for you as a carer.

You honestly should be getting more help

The whole situation sounds appalling to me. I think you need to contact your MP for some help.

Set everything out neatly and briefly to a time-line:- what happened, what was promised or should then have happened, and then what didn’t happen. Name names if you want to.

Hiya Cloudygal, I worry mainly about my son and how awful it is for him. It’s really frustrating not being able to get health services up and running especially when he’s allocated to a consultant. I just don’t know what to do anymore.

Hiya Ayjay, Thank you. It is truly shocking and I have gone to my MP about 18 months ago and still no movement from those responsible for his health. I’m upset because my son is just being left and he’s really suffering.