10 stages of exponentially increasing incompetence

Haringey's Transitions Policy says that the process of a disabled young person's care moving from children's services to adult services is not supposed to be a 'cliff edge' experience and there should be no service gaps. The young person and the family should be fully involved in the transitions process. There is a user-friendly Preparing for Adulthood Pathway Guide with lots of nice pictures in it - and it all seems so fluffy and friendly and smiley and happy.

The experience does not meet with the expectations of either the policy nor the pathway. The process has been more reflective of Dante's Inferno

It's October 2021 and my son's direct payments for social care have stopped abruptly. My son is profoundly disabled with multiple complex conditions and he gets support for social care in the form of money. This is because Haringey are unable to provide the services he needs. So the money is instead of the services and we use it for social care support like personal care, home help and social activities. The money has already been spent on his summer play scheme and we are in a panic as to where we are going to find the near enough thousand pounds we need to pay for 10 days of daytime play scheme.

We complain.

We get an email back written jointly by two Haringey Children's Services Assistant Directors, Bev Hendricks and Jackie Difolco.

The payments are reinstated and the Assistant Directors assure us:

• "The process of... transition would continue in the background well before the child’s 18th birthday
• "... you as the parent would be involved in those discussions.
• "There is no suggestion that the funding would cease, and
• ".we work hard to prevent ‘cliff edge’ experiences for children and their parents once they turn 18 years old."

They two Children's Services Assistant Directors also said that Zack's case would go to transition panel on 2nd November 2021 (between his 16th and 17th birthday)

None of this happens.

Both Haringey Transition Policy docume nt and theemail back written jointly by two Haringey Children's Services Assistant Directors, Bev Hendricks and Jackie Difolco say that Zack should have been referred for adult social care between his 16th and 17th birthdays (specifically on Tuesday 2nd November 2021) and that this would go on quietly in the background.

This does not happen.

According to information on the Haringey website, a 'Continuing Health Care' assessment by nurses from Haringey's Clinical Commissioning Group would be undertaken at aged 17.5.

This did not happen.

On 23rd November out of the blue a social worker contacts me and says she needs me to fill in a form and gives me 24 hours to do it. She needs the form back by the end of the following day so she can send it to panel on 29th November 2022.

More than a year later than the two Assistant Directors for Children Services had said it would happen.

This can't be a surprise to anyone, can it?

With everything else messed up at every other step of the process, despite what the Transition policy says and despite the assurances of the two Children's Services assistant directors.

So. we complain again, referring to the previous letter and assurances.

It is agreed that the social care payments will continue but we have to agree to an assessment with less than 2 days notice. This is unreasonable and we are unable to make that data at such short notice.

It then takes another 3 months to arrange the assessment.

Haringey ignore and do not respond to emails from us and then our sons Headteacher

Its now May 2023 and our son is over 18 years old.

The Haringey social worker turns up at our son's school an hour late. The school are hosting the assessment and the meeting has already begun with the Educational Psychologist sent by Haringey. The social worker apologizes, and says he had 'other priorities this morning' having had other priorities for the last 3 months as well! So, this assessment is conducted without the Haringey Social Worker ever meeting our son, but he doesn't let that stop him!

Outcome of the meeting

1. Our son is referred for Continuing Health Care and we are asked to fill in a 2018 copy of the DHSC triage form. A paper copy is sent home and the social worker tells us to supply supporting evidence. The form asks for the sources of the evidence. We discuss with the social worker what evidence he would like included (doctors letters etc)
2. We have to fill in a consent form, which is sent home in our sons school bag.
3. The Social Worker tells us that there is only one carers assessment per household and the social worker will progress this without any further input from us (its now September, 4 months after the meeting, and we've heard nothing).

In order to be eligible 'Continuing Health Care' (nursing care in our home) you need to be deemed as having 'high needs' in 2 out of 11 domains on things like breathing, eating, personal care. Our son has high need in 7 out of the 11 domains.

We supply evidence from Great Ormond Street Hospital, The Royal National Orthopedic Hospital and Whittington Hospital.

We reference everything and along side the Continuing Health Care triage form we send the hospital letters. We get the form and evidence proof read by the Head Teacher of our son's special school.

All this takes time. After about 6 weeks we submit the form via email.

And then the summer holidays come along.

Haringey reject the application because there is too much evidence .

We are told we are being sent a revised copy with the evidence stripped out to sign.

Having been told by the Educational Psychologist that the Continuing Health Care nurses have rejected our form because there is too much evidence. We are then contacted by someone who tells us they are a nurse and they want to visit.

Great we say, bring round the Continuing Health Care form and we will sign it.

2 nurses come round and we work through another form. After an hour and a half and with the form now completed, ask if we are eligible for the Continuing Health Care. They say they need to go away and triage and make a referral. We ask why?

Despite bringing round a Continuing Health Care triage form, they are not continuing care nurses. They are from another team we have never heard of and have no idea who they are.

We ask them to leave.

We later find out they are from something called the Epilepsy pathway - we have never heard of it! We have asked for more information about this pathway.

This has not happened.

We get a call from a random mobile while we are on holidays. It could have been anyone. It was Haringey.

We tell the person on the phone we are on our holidays and ask if they can they call when we back, preferably not from a mobile but using the landline so the call is recorded?

They are persistent and ask us do we want Zack to be on the Epilepsy Pathway or not?

We have no idea what that is and ask if they will please call when we get home.

This has not happened. Its been more than a month.

We are eventually sent a paper copy of the now revised Continuing Health Care form.

Having not only removed all our sources of evidence from the Continuing Health Care form that asks for sources of evidence, the Educational Psychologist has made some diagnoses that I do not recognize and do not know of any sources of evidence that agree with those diagnoses.

Also, they have filled in the Equality Monitoring Form. The form is to monitor equality of access for patients on the basis of protected characteristics.

The person who filled in the form filled it in for their own personal characteristics and not our sons. And then sent them to us. They have presumably consented to themselves breaching GDPR regulations and (un?)lawfully disclosing their personal characteristics to us?!

Pretty sure that should not have happened.

Haringey Transition Policy docume nt from the Haringey Local Offer, Preparing for Adulthood, Transition page. Haringey's Transitions Policy says that the process of a disabled young person's care moving from children's services to adult services is not supposed to be a 'cliff edge' experience and there should be no service gaps. The young person and the family should be fully involved in the transitions process. There is a user-friendly Preparing for Adulthood Pathway Guide with lots of nice pictures in it - and it all seems so fluffy and friendly and smiley and happy.

Extracts below