Dear Councillor Brabazon, here's 10 easy wins for you
- By The Difficult Parent
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- 28 Sep, 2019
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The true measure of any society can be found in how it treats it's most vulnerable members... ...So, here are 10 easy wins for you. This list is not the first time we have asked for these common professional practices to happen; nor are they in anyway difficult to enact; these are the basic fundamental foundations of working professionally and cooperatively. We merely ask that the ways of working cooperatively that would be a minimum expectation in professional life be transferred to working in co-production with parents.
Dear Councillor Brabazon
Now, about working with those difficult parents of children with super powers
Firstly, I would like to thank you for the support you give to the parents, professionals and those of us who advocate for the families of children with 'super powers' in Haringey. Our children are truly heroic and if I can be one hundredth as impressive and powerful as they are every single day I will be able to solve this problem in a heartbeat.
Following your letter of commitment that all within the Local Authority have made, to a model of co-design and participation with the parents, carers, partners, and stakeholders with responsibility for 'super children', I went to my place (its not a palace) of solitude, there was only me there and thought of 10 ways of working in an inclusive manner that may help to rebuild the trust in our relationships with the local authority. These 10 quick wins are listed below - with a little anecdote regarding my recent experience over the last 6 months.
Following your letter of commitment that all within the Local Authority have made, to a model of co-design and participation with the parents, carers, partners, and stakeholders with responsibility for 'super children', I went to my place (its not a palace) of solitude, there was only me there and thought of 10 ways of working in an inclusive manner that may help to rebuild the trust in our relationships with the local authority. These 10 quick wins are listed below - with a little anecdote regarding my recent experience over the last 6 months.
1. Please can we have a date in our diaries - well in advance
Although there have been some meetings regarding parent engagement, the last one was at the end of July 2019 and the next one, which we were only invited to this week, will be at the end of this half term.
It has been 3 months between meetings and we as parents have had no idea if and when the meetings would reconvene. We notice other meetings - such as the SEND Improvement Board - have their dates and frequency well in advance, for a calendar year and beyond. Could this happen for parent engagement too please?
It has been 3 months between meetings and we as parents have had no idea if and when the meetings would reconvene. We notice other meetings - such as the SEND Improvement Board - have their dates and frequency well in advance, for a calendar year and beyond. Could this happen for parent engagement too please?
2. Why not have rotating Chairs for meetings?
Having a rotation list for the chair of meetings and alternating between parents and professional would really show us all that we are equal partners.
3. As parent carers we really need to see meeting minutes we can trust
Sadly, in recent months parents have been in the position where they have questioned the veracity of meeting minutes. Whilst this of course is a better position than last year, when we were asking that meeting minutes and agendas be published online, these minutes need to be:
Minutes that are accurately taken.
They must be publicly available once agreed.
The only response to parents questioning minutes is 'Your comments are duly noted in the minutes'.
Minutes and notes must not be added to after the meeting, with details and topics that were never discussed, let alone agreed upon in the meeting.
Parents have had experience of bad practice in all of the above in recent months.
Minutes that are accurately taken.
They must be publicly available once agreed.
The only response to parents questioning minutes is 'Your comments are duly noted in the minutes'.
Minutes and notes must not be added to after the meeting, with details and topics that were never discussed, let alone agreed upon in the meeting.
Parents have had experience of bad practice in all of the above in recent months.
4. Please ask officers to send agenda and papers well in advance
It would be really helpful if agenda and papers were sent out well in advance of meetings to give us parents time to absorb, comprehend and understand them.
5. Please ask officers to read their own papers in advance
Earlier this moth, at a multi-disciplinary scrutiny meeting the papers, which had been sent out a week before, had been read by the representatives from SENDIASS and Difficult Parent and a Whittington Health professional only. No Haringey staff had read them.
How can local authority carry out internal scrutiny if their staff don't read papers? It was really sad because the papers were the proposed Direct Payments Policy and one of the findings of the pre-consultation was that professionals are unsure of the policy.
How can local authority carry out internal scrutiny if their staff don't read papers? It was really sad because the papers were the proposed Direct Payments Policy and one of the findings of the pre-consultation was that professionals are unsure of the policy.
6.Please ask officers to ensure they give reliable information to parent carers
It is really important that parents are given the right information at the right time.
With reference to the Haringey Local Offer website, the list of parent groups on the Haringey 'Get Involved' pages confuses me.
HealthWatch chair and convene the Transitions Group, but it is only SENDIASS and SENDPACT that the Difficult Parent sees regularly attending all of the other meetings. Stella's autism group have attended the Parent Engagement Group.
Haringey need to be clear who parents should go to, to 'get involved'.
With reference to the Haringey Local Offer website, the list of parent groups on the Haringey 'Get Involved' pages confuses me.
HealthWatch chair and convene the Transitions Group, but it is only SENDIASS and SENDPACT that the Difficult Parent sees regularly attending all of the other meetings. Stella's autism group have attended the Parent Engagement Group.
Haringey need to be clear who parents should go to, to 'get involved'.
7. Please ask officers to keep in touch! Let us know you have received information
These easy wins are not a difficult ask, they are the foundations of working professionally. We merely ask that the ways of working cooperatively that are a minimum expectation in professional life are transferred to working in co-production with parents.
Please action what we request - and keep us informed.
Please action what we request - and keep us informed.
8. Please ask officers to be more moderate in their use of language
Questioning the local authority often results in accusations being thrown - you are calling me a liar, you are questioning my integrity.
Now you might think it is the parents saying these things - nope, it's the professionals aggressively throwing around this language.
Please stop.
Now you might think it is the parents saying these things - nope, it's the professionals aggressively throwing around this language.
Please stop.
9. Please ask officers to really listen to us and make the information accessible and available and easy for parents to read and access
We have made so many sensible suggestions regarding engagement with parents - we are not asking for gold plated flying wheelchairs. Just listen to us and act upon our advice - make the newsletter look more newsletter-like; simplify your language to make it more accessible; we've already said all of the above - is the culture change to professional respectful engagement such a big ask?!
10. Please, ask officers to respect us, treat us with dignity. The same dignity and respect they should show you, Councillor Brabazon
Thank you for taking time to read the blog
Sincerely,
The Difficult Parent
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
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.
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?
