Care needs assessment

[Fiz]

I managed to get a letter off to my MP. He'll read it on Monday. It absolutely exhausted me composing and writing it and getting it off. It's times like this that I realise how little I am able to do. Still, it's sent. Hopefully it will change things for others, I think social care in the community is on the brink of collapse.

[ditchdwellers]

Please update us when you get a reply, Fiz.
I know how much energy, both physical and emotional, it takes to write these sort of letters so well done for doing it. 

[Fiz]

My MP's response arrived today. I'm unsure if he took in what I had written in my letter because I said that my adrenal insufficiency has improved and I am hopeful that I won't need help at home now but that I was concerned about the lack of response or offer of care in five months and want to ensure that it won't happen to others in need of urgent care and yet he says in his letter to the Director of Adult Services that he hopes his contacting them will get things on a practical footing and lead to a positive outcome. His sentence to me says he's sorry to hear of this disappointing situation and he will ensure the reply from the Director of Adult Services is sent to me as soon as he receives it. 

Hopefully the Director of Adult Services will fully take on board what I was saying when he reads my letter and change the referral system so people are assessed quickly and not neglected. It would probably be too much to ask for an apology for the distress that I have been through being so alone and so unwell. As I said that "I hopefully" won't need help at home now, it would be good practice for Adult Services to phone me and check whether I am okay before closing my request for assessment because as far as they're concerned until hearing from the MP I am still waiting for care five and a half months on from requesting it. 

Maybe it's a ploy to cut back on their budget. Just don't respond to requests for care assessments?

[ditchdwellers]

That's a hopeful response from your MP,  Fiz . It will be interesting to see how Social Services act following this.  I'm sure for every complaint that is made, there are innumerable people who havè received similar treatment but are not in a position to actually make a formal complaint. 
I feel it is part of my responsibility to hold people to account for their poor services and complain like the grumpy, middle aged, old bag that I am! However, sometimes I'm too unwell to do this, and I always hope there's someone around who can fight my corner for me. 
     to all fellow complainers,  and if anyone needs help with writing a letter of complaint please let me know and I'll do my best to help or signpost you to an organisation who can assist. Take care, my fellow Ouchers 

[Fiz]

My doorbell went at 9.15am today. I had collected my doorbell receiver from the kitchen where it charges overnight so could let the caller know I was on my way and put my dressing gown on and went down to the front door. A lady in gown, gloves and mask was there saying she'd come to provide me with my daily 30 minutes of personal care! Nice to know they were coming! Something tells me the MPs letter has triggered a response! I was so shocked to see her and so unprepared that I turned her down today asking her to tell her office to phone me. I needed time to consider whether I can manage alone now or do I still need help. 

Yesterday I had real deep extreme fatigue and had to go back to bed by lunchtime as I couldn't sit up as I didn't have the energy. That's the first day in a while that I have been incapacitated but it was enough to give me caution and not turn away care without thinking it through. My CPN came this morning and also thinks that having waited so long for this care that I should accept it and see how I go. She thought I could think of other things they could do in the 30 minutes if I don't feel able to shower that day such as lunch prep but I am unsure more than personal care is on offer. 

I got a call from the Mental Health and Substance Misuse Team social worker about the care this afternoon, she had assumed the reablement team would phone and make an appointment with me rather than just turn up. This social worker told me a few weeks back that my request for care had gone to her team by mistake and should have gone to the physical disabilities team and that her manager had told her to send the phone assessment results through to the physical disabilities team for them to action. I'd heard nothing since and as she's phoned me and still clearly holds my case it appears it never got sent to the physical disabilities team at all hence zilch response. 

My letter to the MP appears to have brought an unannounced carer to my door but my hope is that the five and a half month wait for care will be investigated so that it doesn't happen to somebody else. I actually had to reach a point in wellness/health to be able to advocate/action my request for help to the highest level needed to get a result but reaching that point of wellness means the help is no longer crucial. Sometimes I wish I had a family member to fight my corner for me when needed! 

Ho hum. So I have a carer coming tomorrow morning.

[Fiz]

Well the ladies are lovely and have helped but not in the way intended. The reablement team have organised two weeks of 30 minutes of care each morning but they work 7am-11am and can't guarantee what time and they have arrived after 10.40am by which time my energy has disappeared as it's run out by then. 

Saturday I actually woke feeling well enough to shower and stupidly waited for the carer but by 9am was beginning to flag and started to have doubts as to whether I would manage it and at 10.50am when the carer arrived it was a definite no. But they bring me a hot drink which I literally have not had the energy to make for myself for months, bring me morning medication so I am actually taking my BD meds twice a day and Saturday the carer put clean sheets on my bed which felt amazing. They're coming too late for me really for personal care as fatigue is my issue but I understand that a reablement team don't work to the same schedules as they provide two weeks care post discharge. The carers have all thought I have just left hospital rather than someone received a letter from the MP and that's why they're here!

This morning an OT assistant came to assess my ongoing need which she doesn't believe that I need because the reablement carers agency have told her that I have turned down or haven't needed personal care. I did state the timing is wrong for me but she seemed unable to understand fatigue at all. She lacked empathy in its entirety. She said that they only offer help with personal care, they don't offer meal prepping, they expect you to pay for meals on wheels. But that's only one meal, it seems they don't offer any help with other food or preparation or washing up. If a carer is here for personal care they can prompt with medication but otherwise it's just personal care. 

I have no idea what the financial assessment will look like, I need to write notes from Sunny's suggestions as they were good. Partly I'm thinking help 2 or 3 times a week would be enough but what if they're my okay days and other says are worse? Ho hum. I'm about to spend a lot of money on a powerchair so depending on what their assessment says my contribution is, help may not be possible for a while anyway but we'll see. The carer didn't turn up today and I haven't found the energy to make a hot drink. The agency did phone me at 11.15am to tell me there'd been an emergency which had held up the carer.  

I did text a friend who has just started having carers after a hospital discharge as I was wondering how anyone arranges to see people or do things if the carers can arrive anytime during a whole morning and she did say that it sometimes feels their existence runs your life. I hadn't really been aware of this negative impact. But they have been nice ladies and have helped.

[ditchdwellers]

The only thing I can suggest is to request a personal budget/direct payments so that you can employ a carer/PA of your choice to assist you with tasks that would be helpful for you at the times that you need it.

My PA does all sorts of things for me, including changing the bed, filling up my bird feeders (I spend a lot of time watching the birds from my armchair!), helping clean out the kitchen cupboards, cleaning the fridge, dropping off parcels at the post office,  taking me to hospital appointments and shopping, and anything else I need help with! Making decent tea was one of the most important employability criteria  

I use a recruitment agency and payroll service that specialises in assisting people on direct payments and they have a contract with the county council to deliver this service. It relieves the pressure of being an employer as they deal with the all the pension issues etc. You just have to have a separate bank account to receive funds from the council and make payments by direct debit and standing order from there.  You remain responsible for the payment of your PAs wages either by cheque or direct transfer. There is a complete banking service available with my provider that does absolutely everything, however it is quite expensive and would reduce how much of my budget I had to spend on time with my PA. 

If Social Services continue to be awkward, perhaps a follow up letter to your MP might be in order. I think they need to be made aware of the complete lack of communication that occurred and the failure, yet again, to understand your needs. 
Any right minded person would be appalled by the treatment you have received (or I should more accurately say lack of treatment). 
Hang in there Fiz, and try not to worry too much about the financial assessment. 

Sending you gentle hugs. 
I wish I had some extra energy to send your way, but I over did it yesterday and I I'm paying for the consequences today!

[Fiz]

The FAB (financial and benefits) phone assessment is 7th June. They've sent an email saying what paperwork that I need to have to hand however it's a zip attachment that my phone won't open and I don't have a computer. The email states an URL which gives guidance on how to open the security file which implies they anticipate people have problems. I'm not sure how a list of the required documents to have to hand for a financial assessment is top security as it says nothing about me. 

I've been very emotional the last few weeks. Sometimes just the thought of how ill I am feeling, the deep fatigue, just sets the tears off. I try not to follow that thought, and distract myself to turn the tears off but underneath the surface I feel like I am on the edge and it doesn't take much before I cry.

I have no idea why but the stress of the care and all that comes with this, a good chunk of which is the financial assessment but it's not just that, feels totally overwhelming and undoable. I'm not coping emotionally with how unwell I am right now and all this feels too much. Part of me thinks that I am better off on my own, I have been able to fetch myself water every day for weeks now so I am no longer dehydrated so can manage.

I've had two morphine doses today and the carer arrived at 11am, too late to help with breakfast but that's okay. I'm going to try to force myself into the shower tomorrow morning but it may be before they arrive.

[Fiz]

I received a telephone call from the Manager of the Mental Health and Substance Misuse Team who is handling the complaint from my MP. She said that she's reviewed my notes and that my complaint is entirely justified and she apologised fully and will put that in writing. She wanted to tell me the changes to procedure that she has made in the light of me highlighting their failings. Now when 'duty' receive a referral from CART?KART? who took my call in November, the first thing the duty team will do is phone you to clarify what your need is (bit confused about this point as I said in my calls what my needs were and what the problems were but I guess people might not have understood and noted what I was saying clearly) and take immediate action if necessary. In my case that would mean that as soon as I had been telephoned they would have realised that I needed care at home and the two weeks reablement care could have been started the following day back in November.

It was such a relief to hear her say the changes and to know that other people will get a response from them within a working day to clarify need and that nobody will go through what I went through. The changes they have made were total common sense to me and part of me can't understand how it wasn't like this in the first place but at least I know that changes will be made from this point on. 

She has an appointment with the Manager of the physical disabilities team tomorrow to discuss the handover as she said that I clearly should have been referred to them rather than her team as my need is not mental health based. I mentioned that the reablement team haven't been as helpful as they could have been due to arriving late morning and I worried that the new agency taking over on Tuesday would also come too late to be helpful and she said she would mention that in the handover tomorrow and said that possibly direct payments would be a better option for me to which I agreed and she said she would also write that in the notes for tomorrow. 

So, I am glad the system has changed and that people will be contacted within a working day of their request for assistance to clarify what help is needed and how quickly. So, a good result from my complaint via the MP. 

To a point, I'm not so worried about care for me, but this complaint should help other people.

[ditchdwellers]

That's a great outcome Fiz! I'm so pleased for you that you have finally got a response that you are happy with. It's must be a great feeling to think that you have made such a difference for other people who try to use the system after you.

I hope all progresses well from now onwards and you begin to get the care you need, deserve, and are entitled to. This has been a long fraught battle for you and I sincerely hope that it comes to an end soon.   

[KizzyKazaer]

Good on you, Fiz - you shouldn't have had to face such a battle over this using energy you barely have; just shows what a total mess 'social care' is at the moment, so I hope that your MP feeds it back to those in government as they continue 'reviewing' the whole system (ie kicking the can down the road until the pandemic is deemed completely under control, I suppose)

[Fiz]

I've managed to track down the list of things the financial and benefits team want to know for my assessment but obviously it doesn't say why. 

They want to know if I have a funeral plan. I have prepaid for my funeral with Co-op which I paid in one lump sum a few years ago when I didn't think I would be around long. It's not a monthly payment thing, it covers the whole cost. Will they see this as an investment or maybe it's possible to ask for your money back minus admin charges so they see this as money available for use? Or am I over thinking this? Why else would they ask about it?!

I just didn't want my young adult children who are living hand to mouth left with debt after I'm gone and it's not as if I am going to leave enough money to pay for my own funeral or insurance scheme so just wanted this off my mind. I wasn't trying to deprivate my capital when prepaying for my funeral.

[On the edge]

'Care needs assessment' (support does too!), but in the hearing loss area, that isn't possible.  First you have to identify those in need of care or support, and the data protection act prevents ANY deaf or HoH being assessed properly for need,    indeed what the criteria actually is TO assess nobody can agree to determine.  Care etc is currently determined by rote, i.e. by campaigns.  E.G. deaf need interpreters, need schools to sign, not speak, to not use English but signing own grammar, but how many are deaf, and how adept deaf ARE at signing it is impossible to determine, and, it is now a 'preference' not an identified need, aka a 'choice' and a 'right'.

End of discussion!  Suggesting that all with hearing loss get assessed properly and need determined as to what is best support for them was attacked quite strongly as an assault on culture etc by the deaf themselves.  Two area after a fashion (!), do assess, at least in part, they are the local SS/Authorities who get approached for support, and the DWP (!), the latter decided 63% of all hard of hearing were not and cut their allowances during the PIP fiascos. The signing deaf were unchallenged.  Clearly  the DWP vie was if you used sign language you were in real issue.   Clinical diagnosis does nothing but state how many decibels of use you have or not, that work for you, they don't suggest what you need to do, to manage it, other than a hearing aid, join a deaf club or learn to lip-read despite the options being unviable for most.

Various charities claim over a 100K deaf are signing regularly, and that just 900 interpreters exist to serve them all.  Interpreters themselves said this wasn't their own experience.  In reality near 3/4 of deaf never used one but relied on family to do that.  The ATR blog (One despised by most UK deaf activism, and mine!), attempted to run a campaign that would effectively prevent deaf using 'choice' as regards to support, it was not a popular view.  I don't apologize for that and I still campaign for it, currently loying NHS insurance companies to force the NHS to accept professional support only, after all, access to the NHS is a right for us all, but not every tom dick or gertie should be allowed to translate medical jargon, there are ethical issues too. I believe everyone deaf has a right to professional and vitally, NEUTRAL support, especially in health and legal areas etc.

Deaf charities condemned me outright, and still do, they called me names I cannot print here, banned me from near every online UK site they had, even today my blog exists only on an USA aggregate. They were exposed for direct abuse of a deaf person and endorsing the right of other deaf to refuse professional help, despite demanding more interpreters, the whole issue of support and care for this vulnerable area (Despite the shouting), is a dogma-run chaotic and biased restrictive mess.   I am unsurprised the disability movement decided they are too volatile and random to be included in their campaigns.

Would proper assessment reveal their shortcomings?  I believe yes it would and why they resist it.  Too much money at stake and 'jobs for the deaf boys and gals',  I don't think need care or support has a part in it for them.  Certainly inclusion doesn't.  The fact this comment would NEVER get aired on any UK deaf site is proof enough...

[ditchdwellers]

I think you may be over thinking it Fiz.
It's a bit of an odd question but seeing as it's something you paid for some time ago , I have no idea why they would or could object.

[On the edge]

I've managed to track down the list of things the financial and benefits team want to know for my assessment but obviously it doesn't say why.

They want to know if I have a funeral plan. I have prepaid for my funeral with Co-op which I paid in one lump sum a few years ago when I didn't think I would be around long. It's not a monthly payment thing, it covers the whole cost. Will they see this as an investment or maybe it's possible to ask for your money back minus admin charges so they see this as money available for use? Or am I over thinking this? Why else would they ask about it?!

I just didn't want my young adult children who are living hand to mouth left with debt after I'm gone and it's not as if I am going to leave enough money to pay for my own funeral or insurance scheme so just wanted this off my mind. I wasn't trying to deprivate my capital when prepaying for my funeral.

The DWP view ISA's as savings too which my partner set up basically to cover future funeral costs, she is advised now to stop doing that as the DWP included it as income, because there is interest added (90p a year!).  Any money put aside for a funeral is income as the DWP is concerned. It is essential any policy contains zero return afterwards or they include it.