This can't just be my experience

I am now very irritated by the lack of response by social services towards my son, more especially in the last few months. I have found myself being totally blanked by the allocated social worker and her general manager, who I have emailed twice for a response.

The latest request for a response was made to this general manager on 22/6/2020, asking her to respond to my email to her on 24/4/2020. I had asked for assistance during lockdown for my son. It has been 10 weeks since I first alerted the general manager of problems.

Neither she nor the allocated social worker has responded at all.

I strongly sense, this time around, that the lack of response is due to the minutes to my son’s meeting, which have been distributed to the service, by health, and the handpicked ‘history’ which is contained within these minutes. All the so-called ‘history’, is 3 decades old and not applicable to my son here and now. I am also aware the social services will do as they want with the information they have been given. I believe this is the reason they are ignoring me regarding my son, as they now believe my son primarily has A.D.H.D. and ‘challenging behaviour’.

After emailing the new locum, he has said he’s going to ‘address it’, that he’s intending to address ‘his’ minutes. However, he hasn’t done so, for the last 3 months, after circulating them. This is a worry, as is what is contained within them, and that social services appear to be adhering to making my son a non-urgency, due to what has been stated.

I find it absolutely appalling that there is also a non-urgency to rectify these matters if only to put it right for my son’s future. His future is looking bleak right now, due to the misinformation from the locum consultant. I believe it was done on purpose, in order to hamper my efforts to gain enough support for my son. The review is due to be done by social services of my son’s package of support and it appears to have been placed on longterm hold, by social services.

I am deeply concerned by this and the obvious complete ignoring by social services.

I have reason to be concerned, as I have had the experience of my son’s package being slashed and, of struggling severely after this was done. This time it is imperative that doesn’t happen again. I must say I have no faith in social services reviews of packages of support, as I have already had the situation of social care being able to tell an Ombudsman, my son’s seizures are behavioural and not part of his epilepsy.

How can I ever trust this department again? They even lied about providing respite and got away with it and it wasn’t a one-off situation, it was years of denying any respite. It wasn’t just an injustice, it was more than that. They lied to an Ombudsman, who in turn took their lies onboard. Even though, there was no evidence they had provided funding for respite, in the many years they hadn’t actually provided it at all.

It’s their dishonesty I resent the most.

One of the worst things is having to have social services ‘involved’ due to my son’s section 117 and they only appear when they want to try justifying a care cutting activity via review. Even if they can’t justify doing this, I have found they will ‘just do it’ and any excuse will be made, to do this.

This is why I’m so concerned about the ‘minutes’ to my son’s meeting which have been constructively written up by a consultant who now claims that he’s been ‘getting to know my son’ since early March. When he hasn’t so much as even met him in order ‘to get to know him’.

It is a false claim, by someone using their professional position to mislead other professionals, and at the same time making it official, within my son’s health file.

I have to ask myself why, would any consultant do that, and the answer coming back is because the previous one set this situation in motion. I have always known that was happening, but failed to view the file. That is even when I specifically requested to view them, I found myself being delayed and ignored. Also, barriers being set-up to prevent me viewing my son’s file and I did ask to view them, long before he was an adult even.

There’s obviously, much in my son’s files, that shouldn’t even be written or read by others.

I have mentioned, my son’s files contain information that could only have been gained as I had been meeting ‘the professional’s’ and speaking with them. Yet I have been denied access to see what is actually written. I have capacity regardless of whether my son has.

It is an important point, I am making.

These professionals mainly randomly demand my time and then they write in my son’s file and then don’t allow me access to see what they have written. It isn’t the case that I could ‘just trust’ what has been written does actually tally, with what I have said. So it is wrong to be denied access to my son’s health files.

From my experience, I am subjected to being ignored, even though I am advocating on my son’s behalf and it seems I am spoken to when it suits. I only make myself accessible for a short time before I am reminded, that nothing ever changes, in my experiences of contact with these services. I am not happy, with disregard and often wonder where they ‘get off’ about repeatedly doing it.

It is torture, to be in this position where my son is being ignored because he is complexly disabled and I am ignored when relaying my son’s health needs and social care needs. I find the worst way of communicating with these services is to speak on the phone or face to face, as that is the time where they will twist and totally misrepresent what I have told them. Either by dismissal or completely.

But when I email them or write, I often receive no responses. Both service complaint teams also dismiss and ignore my complaints about this doing. In the meantime, my son gets no proper services.

In fact, the mention of the roundabout, of epilepsy charts, has been mentioned yet again. I have completed these for up to 3/4 years solid at 1 stage, for absolutely nothing to come from doing this.

Is this just my experience or do others face similar experiences of being ignored by the services?

Has it actually got worse since lockdown or the same as before?

Have you ever made a subject access request for details ow what they have written about you?
I did, it was clear that I was seen as a problem, some of the things they had written were truly shocking! The head of LD services and others were made to apologise.

Hiya Bowlingbun, I did make a SAR request and they took years to produce anything. I also had to ask more than once for a S.A.R. When I finally received the documents (all 6 of them) most( at least4) were completely blacked out and the rest were mostly blacked out. The best part was even one of my own letters I had sent them was almost completely blacked out. I took the matter up with the health trust legal services who had sent these 6 documents and they never answered me at all. I emailed them several times.
The truth is, there cannot be just 6 documents relating to what has been written about me…in the 34 years, I have been seeing them for my son.
They only gave me access to recent reception inquiries(you know when I had to phone the main number to speak to a professional) and one letter I had sent them which was almost entirely blacked out from viewing. No access to any files at all.

Did you complain to the Information Commissioner?

Hiya Bowlingbun, The problem is because I am getting a complete non-response, I’m not able to get to the information commissioner.

Non Urgency yes been through that, i applied for a carers assessment advised by carers uk, I waited and waited and waited, no contact no carers assessment…

I rang and rang, no one available to talk to , emailed again and again, no answer, sent a recorded letter, no answer.
What more could i do? get one of those lorrys with a big display board on “can I have a carers assessment”
Went through complaints, the complaint should have been dealt with quickly and promptly, nope, no answer.

I went to the doctors, I don’t know this but apparently the Social Services had contacted the doctor, the doctor had said
my wife was fully able, had managed to get to the doctors no problems did not need any support.
If the doctor had bothered to get up from behind his desk, he would have seen my mum sitting about 2 metres away from his door, waiting to take my wife home again.
So the doctor was saying there was no urgency, no help was needed.

Complaints was supposed to deal with my issues promptly, what they did was send the complaint back for local resolution.
But the local office had their chance, give a carers assessment as i was entitled to.
I kept complaining back and forth to the local office and head office no one took any notice.
I just don’t know what was going on, why the delay, was supposed to be 28 days start to finish, it was months and months and months.
I got my carers assessment but was given no help and support, on the doctors say so? I don’t know.

Are the doctors involved in Social Services assessments, i don’t think they are.
It is social workers who decide what care is needed, or is it?

My wife has Non Epilpetic Attack Disorder, so not epilepsy, cannot be controlled by medication, fits without warning any time day or night.
Needing supervision, someone to be there just in case, could not have baths without someone there, could not cook hot meals, use a kettle etc.
Going out needed someone with them in case of a fit, but my wife had severe mobility issues anyway, another thing the GP missed.

They should all be working together to make sure people are getting the right care help and support, social services and the doctors etc.
We didn’t get any support, no leaflet, no nothing.

Maine i was sent a leaflet about an organisation giving support to parents looked after disabled kids, I don’t have any disabled kids, is there nothing like that in your area?
I realise your son is now an adult but you are caring for him as are many other parents looking after older disabled kids.


This ignoring is awful.

I have definitely had this. I generally write to the person above the social worker, but that’s only going to work if the social workers boss is sympathetic…not going to always help.

What sort of package does your son get? How many hours?

Its totally not on that they reduced it before . There would be no justifucation for this unless the needs lessened.

I think you would have to make it totally clear that if they if they did that again… his care with you would totally fall apart… you can only deal with so much.

How is your son…did you manage to get the epilepsy medication re-issued?

Hiya Londonbound and Cloudygirl,
It is just unbelievable the levels health and social care will ignore. I am really sorry to hear you’ve been a victim of this practice.
My son is on a 117 aftercare and his needs are meant to be regularly reviewed. The last time it was reviewed was 2016 and even then it wasn’t done properly. Apparently it was done on the phone and then they(social services) changed the story several times after. Since 2014, nothing has changed in the plan and that includes the amount of direct payment that hasn’t changed since 2013…it was reduced. It was reduced as health suddenly without warning pulled the rug from under my son’s feet and just verbally said ‘he had no health needs’ despite being diagnosed with complex epilepsy. This situation caused social services to assess my son’s needs in early 2013 and they slashed his care. They also tried charging me for it. The matter went to the Ombudsman in 2014 because they left him without enough support and the case was upheld in my favour. It made no difference though as the direct payments never increased in amount and it hasn’t done since via the ignoring process. Health did have to pay there share though.
Before health pulled out their part of the care package, they had also deemed all their specialist services, as unable to manage him. Respite and separately a day service trial over a 3 part day period. They had failed to ensure his safety. The last stay at respite they were short-staffed and they failed to manage his seizures, to the point of him being returned home with 2 strained ankles and excluded from ever returning. The day services were an absolute shambles too. On the last day, of the 3 part days, they mismanaged him so badly that during a seizure they allowed him to smash his hand through a security wired glass door…which severed his hand. They then waited for me to pick him up and have to take him to A&E on my own. They absolutely were at fault. He was meant to have a quiet room should he seizure. Then they realised someone else’s medication was in that room while my son was having a seizure. They did no more than sneak around the back of the building…and climb through the window all whilst my son was in there…and then having got the medication for another client…the member of staff ran for the door. My son who was having a seizure which causes hallucinations ran and put his hand through the glass and security wire mesh. I was then told he couldn’t ever return.
All the care was placed at home from there onwards. It wasn’t the end of the matter though as they only allocate £8.50 per hour for carers and it got to the point where there wasn’t enough funding for an agency. But social services and health demanded the care continued at the same level and hours and they made threats if it didn’t. Now I have to cover myself unpaid for all P.A.'s annual leave and sickness because the direct payments do not cover another replacement carer. Plus it’s impossible to get a P.A. just to cover holidays and sickness. No-one will do it, so I have to. My son needs 2:1 care also.
In the last 15 years, my son’s seizures have remained uncontrolled with medication…and the medication has been left at the same level for a decade. His seizures have got worse…especially as he has diabetes. He also has P.T.S.D. caused through his hospital stay of 17 months and he has autism and learning disabilities.

You would think as my son is on section 117 aftercare, his needs wouldn’t be ignored…but they are. In the last 3 and a half years I have really fought to get his support right to receive a barrage of being completely ignored…and it continues year in and year out since.
Cloudygirl I managed to get his medication.


I am totally shocked at all you and your son have gone through.

I can’t understand how they can leave his direct payment at that rate

I can see that you have battled so hard to get his needs met.

We have had day placement failures too, and was shocked at the poor quality care. It makes you very wary of others looking after them.

Perhaps that’s the idea …so we just continue to do the work.

That’s good you got the meds

Diabetes uk are running a campaign to make sure people with diabetes get emotional support, it has been proven that giving emotional support gives better results less hospital admissions, a better level of health for people with diabetes.

One of my carees has diabetes 2 and PTSD but not receiving any co ordinated care, it is nothing to do with the nurse that her patient has PTSD.
But stress affects blood sugar levels, the stress of having diabetes means you are more likely to have depression etc, depression affects diabetes, it’s not rocket science, its all been proven by diabetes research.

Emotional support needed for people with diabetes | Diabetes UK.

Someone needs to sit down and have a good think about your son with multiple physical and mental health issues, he clearly needs a multi-disciplinary team to look at all the issues and give co-ordinated treatment care and support.

I had a friend who had a very good care package, too good really, a support worker stayed in his house at night because of issues.
He had his own house, the right level of support and everything, he was very disabled, just couldn’t do anything so needed everything done, washing, dressing, help with feeding, he had so many hours allocated to take him out of the house, shopping, the cinema, out for meals.

Suddenly Social services decided that the care was too much, too expensive and decided to try and do their best to cut the support, he didn’t need a night carer, give him a pendent alarm to hang around his neck.
My friend had to be hoisted into bed couldn’t get in/out of bed himself, what if there was a fire?
The council were just trying to save money.

They sent a succession of social workers, wouldn’t you like to go into a nice nursing home (that would save the council money).

His answer was NO basically.

The council didn’t care about his independence, he had his own house, own life, friends nearby, he had a good life, but the council wanted to send him to a grotty nursing home, just to save a bit of cash.

It was in one of the papers, one of the councils had over 500 people having care packages of over £30,000 a year, too expensive, they couldn’t afford it so put a limit on. No care packages over £30,000, you go into care and that’s it.

Is that legal? probably not but they did it anyway.

All over the country the councils are trying to save money, its not what care you need, it’s what the council can afford.

Hiya Cloudygirl and Londonbound,
I think Londonbound is right, The council just think of costs and if it’s going to cost more than they wish to pay regardless of needs, they will just ignore. However, they also take it one step further and often reduce the costs even further. It is a deliberate action. They have no real excuse to do this to my son as he is on 117 aftercare and it is both them and health who are supposed to be involved in reviewing, but they do it separately.
He has got a multi-agency ‘team’ but they aren’t active or even wishing to be. Year after year, nothing changes even with ‘new’ teams, in place. It is awful especially when there’s problems with his medication. I was reading the leaflet for his epilepsy medication and it states can cause pancreatic problems. 15 years later at the age of 33 at the time, he’s diagnosed with diabetes. He’s 11 stone 2.
Thanks for the link Londonbound.

Keep persisting and you will get through to them. It could be because of the quarantine. If not then still persist because i am sure there is a good reason for the the weak timely replies.

My son has had so many new social workers, I pleaded with the latest one to read his file, she told me she “didn’t have time”. I believe the council’s computerised records are largely to blame for my son’s difficulties in having the opportunity to do various things. In the days of paper files you could flick through, make notes, use a highlighter pen etc etc. I’ve just worked out that it was 5 or even 6 years ago that he had an assessment to be a volunteer at a local miniature steam railway, they said he was the best engine polisher they’d ever had. No surprise to us, he has been polishing our engines since he could walk! I just can’t get Social Services all female staff to understand how much he wants to do this.