10 stages of exponentially increasing incompetence
- By Brian Leveson
- •
- 27 Sep, 2023
- •
More of a trial by ordeal than a well organised clearly set out administrative process for moving the care of vulnerable young adults from Haringey's Children's Services to Adult Services. We have been failed at every stage of the process.
Summary
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
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
1. Aged 16 - social care payments stop abruptly
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.
2. Aged between 16 and 17 - referral for an adult assessment does not happen
BothHaringey Transition Policy document 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.
This does not happen.
3. Aged 17.5 years - a 'Continuing Health Care' assessment 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.
4. Aged 17 and 3/4 - referral to adult social care finally happens
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.
More than a year later than the two Assistant Directors for Children Services had said it would happen.
5. At 18 years of age - no assessments have been undertaken and the social care payments stop abruptly
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
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
6. May 2023 - "The Adult Social Assessment" - finally now starting when our son is over 18 years of age
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
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
- 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)
- We have to fill in a consent form, which is sent home in our sons school bag.
- 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).
7. The Continuing Health Care triage form is rejected - because there is TOO MUCH EVIDENCE
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.
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.
8. August 2023 - some nurses visit - but we have NO IDEA who they are
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.
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.
9. While on our summer holidays we get a call from a random mobile.
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 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.
10. No one is THAT incompetent
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.
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.
Son's now 18.5 years old. Adult social care is still not in place and I have no idea what is going on. Neither, it seems, do either Haringey Children's nor Adult's Social Care Services
Principles of good transition as written in Haringey's Transitions Policy, available on the Haringey Local Offer website
Haringey Transition Policy document
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
Extracts below
Extracts from Haringey's Transitions policy
Extracts from Haringey's Transition's pathways presentation
If you thought SEND was bad - the NHS is seemingly prepared to throw away money to private companies
About 3 or 4 times a year we get the euphemistic message 'Parents please note we have put a letter in your child's bag' - its a world away from how a child's death was handled in my child's first school
Never EVER get on the bus without a camera running if you need the priority wheelchair space
The reality of using a London Bus in the teeming rain on a Sunday afternoon is no joke when the parents of a paraplegic person in a wheelchair clash with the self-entitled buggy-pushing parents of toddlers.
At 3pm today I received some barefaced lies from Haringey Council Adult Social Care in response to a photograph I published online yesterday and the media interest it generated
Haringey SEND Transport are insisting that a 17 year old minibus with no air conditioning is a suitable vehicle to transport my paraplegic son in this heatwave. The appalling conditions inside the minibus inside the bus is something they knew about last summer, yet they have to date done nothing whatsoever provide a suitable minibus this year nor appropriately mitigate the temperatures inside the minibus.The conditions inside the minibus are so bad that they triggered multiple seizures during the heatwave as my son has epilepsy, which they SEND transport department know about and they also know that they are triggered by heat.It is not just son who is impacted: last year we know of one child who died on Haringey SEND Transport in the summer heatwave and another who had seizures.
I am simply asking a question - are we all absolutely certain that the road closure / travel restrictions (commonly know as LTNs) placed on some of the most severely disabled people who are wholly reliant on cars are absolutely necessary
Haringey's road closures exemptions policy for disabled people is not fit for purpose, unduly burdensome and intrusive - it's time to stand up against the pro-LTN lycra-clad cycling bullies
Is the argument for and against exemptions for disabled people in Low Traffic Neighbourhoods really a case of GOOD versus EVIL?
Letters from Labour Grandees and survey results from Haringey Council show people who opposed LTNs are women, elderly and disabled. Yet Peray Ahmet has described anti-LTN people as homophobic, islamophobic, sexist, racist and xenophobic.
