‘Personalisation will mean looking at health services in an entirely different way. Staff will need to understand and embrace the idea of personalisation and shift from an attitude of ‘doing to’ the service user towards one more about ‘doing with’’ SCIE
Friday .. my long awaited day off. That’s irony right there!
Packed all 3 kids off to school had a coffee and then set off on a 37 minute journey (according to Google) up the coast to visit a potential shortbreak provision for Z.
I say potential, it is the only one open to him within the county. We don’t have choice and control in this backwater of a county. Let’s ignore the fact that there are 3 other provisions a 25 minute drive away but they are across council divides and so we can not possibly send him out of county and how dare I even suggest that! We also ‘don’t do personal budgets’ in this county either so God forbid I ask for the equivalent funding to go and purchase from a neighbouring council.
No exaggeration I have actually been told on numerous occasions that Northumberland does not do Personal Budgets for children.
Anyway you can see the kind of mindset I was in having to drive further up North to look at a provision which I was already 99.9% sure would not be suitable for Z’s needs but social care have determined it can meet his needs so obviously I am wrong. I am only his mum what do I know….
I kept telling myself as I drove up in the pouring rain, be open minded do not live up to your difficult parent label. Smile sweetly, go through the motions then you have ticked the box and can move on to the next stage in the fight (yes fight) to get what Z needs.
You see if I don’t go up and look how do I know it is not suitable and how can I argue that? Well I already know it is not by looking at photos of the provision and reading eligibility criteria of the provision. But because I have nothing better to do than prove this…
So I was welcomed in by the manager of the provision, she was fantastic, she explained how the provision was led by the young people. No set menus, no set activities but led by the group in at the time. Big bonus points right there.
She asked me to give her some information on Z and information from me as his mum rather than reading a file. I nearly had to ask her to repeat that as I thought I had misheard. She had just scored major bonus points with that question. At work I always tell parents to start with information on their child as a child not their needs.
So I began to give her some information on my son, his humour, his questions, his stubbornness and his fierce independence. I could see her facial expressions change when I told her he goes off to the shop on the corner with his cash card and comes back with food. It was clear that she was questioning this referral and if this provision was the best place for Z. She also thought it was great that he did this. I sat there wishing that this was a suitable provision as I had respect for this manager running it. (see I don’t hate everyone)
Anyway we had some further discussions about his needs and what would be required to support him there and she showed me around. It’s a lovely provision, very homely and inviting. But as I had already seen on their website no ceiling track hoist and only one electric bed. Individual bathrooms with baths and a small roll-in shower cubicle placed in the room with the toilet cubicles. No shower chair, we would need to bring his own and no specific disabled toilet. She did tell me there was a wet room downstairs they can access but I got the impression she didn’t think that would help facilitate his inclusion or independence.
As I looked my heart sunk, and broke a little more as is often the case in these situations. I thought to myself Z’s social worker and her team manager have said this is a suitable provision! What Fricking hope do we have!!
All my Duchenne parent friends reading this are probably horrified. I won’t go into the details but imagine if you wanted to ‘go’ in the morning and the only way to do that was with the cubicle door wide open!!
We then went to the dining room, again a lovely room. I looked at the table, and this is where my expertise as ‘just his mum’ comes in, as I could see he wouldn’t get to the table to eat as his wheelchair would not fit under it and he would not be able to prop up his elbows on the table to be able to eat independently.
I explained all of these things to her and I think she was on the verge of giving me a hug!
This provision wasn’t set up for children/young people with physical disabilities it is specifically for those with severe/mild learning disabilities. My impression is they are adapting as they go due to the demands in service but also hampered by lack of funding. She hasn’t even met Z but you could tell she wanted the best setting for him even if that wasn’t her setting.
So to recap as I am rambling and ramble when I am annoyed.
The shortbreak provision that my social work team have deemed suitable and have named in the assessment would mean :
A 40 minute plus trip up the A1 on a friday night (nightmare)
The main entrance is stairs he would need an alternative which there is but I actually didn’t see the lift
Use a mobile hoist something he isnt used to yet
Sit and go with the cubicle door open with no wash/dry facility (that right there at 16 is a big no.)
Not be able to eat independently
Not be able to shower unless we can get a shower chair there so that would mean two 40 minute trips up and down to take his up there. We can not fit Zak and the shower chair in the car at the same time. (Funny social work degree won’t teach you things like that)
Mobile phones are discouraged and advised to hand into the office overnight – although I think Zak would have been allowed his if I had pushed it.
Potentially not have any peers that would communicate with him on his level
But this is the suitable provision that will meet the need for Zak to start to build independence and to give us some overnight respite from the 3-4 wake up calls through the night.
So I chatted to the manager a bit longer and then I think between us we came to a decision that this wasn’t a suitable provision. I thanked her for her time. (I really did like her we need more of her type)
I made my way back home to try and salvage what was left of my day off.
I have ticked the box, I have not dug my heels in and I have been open to what the social work team have put forward but how frustrating is it when you have the conversation and you tell them that the provision isn’t set up for wheelchair users. ‘But they are Mrs R we have children who use wheelchairs there, there is a lift.’
Do we really think in this day and age that a lift is the be all and end all of an accessible provision.
But because my 16 years of being his mum and my last 2 years of supporting Z through the awful transition of physical independence to physical dependence counts for nothing then I am not listened to. I am difficult and just overly anxious or have unrealistic expectations – sorry but if the fact I expect my son to be able to have a shit in peace and privacy and be able to feed himself when he still can, well if that is difficult and if that is having high expectations well yes, yes that is most definitely me !!
If this is choice and control, if this personalisation, if this is social care then you can shove that plan where the sun does not shine!
Why can’t we get this right? Personalisation as been on the agenda for almost 10 years, why are
service users still having to fight against those who hold the purse strings and those who write the assessmements. Why do we still have professionals in the field who do not get the whole ethos of personalisation. I was somewhere the other day and was horrified to hear some of the opinions people in health and social care have when offering packages of care
Why are we still not looking towards to outcomes for individuals and only looking at need. And why are we still trying to fit every disabled person/child into the same round hole. It does not work!!
Parents are labeled as difficult if they ask for alternatives no we are not difficult we are proactive and have to be that way because the system is not.
Do you really think I have the energy to be a difficult parent for the sake of it? NO! I am raising three children one with a genetic condition and two that are girls (say no more) one is hormonal and the other is just a crazy 4 year old. I am working more or less full time I do not want to be wasting time petrol and energy on ticking your stupid boxes and fighting against the system.
I spent the 37 minutes back home partly on the phone to my husband whinging about what a waste of a trip that was and how I was right all along bla bla bla and the other part of the drive devising the email to the social worker and team manager.
What do you think?
Thank you for the opportunity to explore the shortbreaks provision that you have deemed to be suitable for Z to meet the needs that you have assessed.
I have visited today and although a lovely provision knowing Zak and his needs I do not feel this would meet his current needs.
He likes to poo in peace, he likes to eat at a table and he likes a shower, none of which he can do at the provision.
Would you like to now refer to the provision I originally suggested months ago
I am concerned that if this is not addressed soon that the Local authority could be seen to not be meeting the assessed needs of my family which is written down in his plan.
Alternatively you could give us the equivalent as a personal budget (I can explain exactly what that is if you like) I thought we could manage the budget and then purchase weekends away for Z with a PA. He could visit different places go and out and have fun! This would meet all the outcomes as well as catering for his needs and ours and of course I would keep receipts.
I look forward to hearing from you.
PS I hope the local SEND inspection has not been too traumatic for the local authority. 😉
Then as I pressed send the whole house blew up and the whole of Northumberland CC IT systems came crashing down as a mere parent suggested trying to take control of the social care purse strings and have some choice and control for her sons support ….
Creativity is a swear word up these parts.
Logging off as a very fed up, disgruntled, frustrated parent #difficultparent
But a parent none the less and a Mum who will fight for her son to have that choice and control.. Now do I go for a run or have a gin 😉