Care needs assessment

[Fiz]

Struggling with extreme fatigue due to the adrenal insufficiency including several 24-72 hour periods of low cortisol induced hypersomnia plus pain as I have had to stop my opioids causing inability to complete tasks I phoned Adult Services in November and requested an urgent care needs assessment. I can go days when I am unable to sit up let alone get up from my bed and on those days I don't eat or drink. Everytime I have had a run of totally incapacitated days I have phoned Adult Services to find out what is happening with my assessment. Each time a call handler answering the phone while working from home enters a memo "on the system" that goes electronically to the assessment team stating that I am chasing up the assessment and stating the assessment is needed urgently. They take notes on what I am unable to do and what help I require.

Finally yesterday I am phoned by a man who tells me he is the duty manager and that my allocated social worker will phone me today to do my care needs assessment over the phone. Once off the phone I Google the phone number that he called me from and it says that it is the Mental Health and Substance Abuse Team and I wonder if I am having the right kind of assessment or why I am dealing with them when my needs are due to physical conditions. I'm concerned by this stage but am left to await my assessment today. 

Sure enough the (lovely) social worker phones and the hub who read my original request for an assessment in November read my previous entries which were mental health related and referred me to the Mental Health and Substance Abuse Social Care Team who have no turn around time for assessments so my case has been in a "duty pile" for over four months before finally being picked up. The social worker said that reading all the various entries the working from home call handlers had written she felt sure that it wasn't them I needed and it should have gone to Adult Health and Social Care. I really don't know what more I could have done except for my repeated calls when well enough to phone as it wasn't until yesterday that I had any incling that it might have gone to the wrong team! 

She said that she would complete the assessment and speak to her manager in the hope that her assessment would suffice and be passed to Adult Health and Social Care and hope they don't need to repeat the assessment or do a different one. She said there's a possibility her team might take responsibility for the mistake and deal with it themselves despite it not being their field. Sounded like that was an outside possibility. 

That took an hour and left me exhausted. I just hope that I don't have to do a whole new assessment and that something gets actioned soon as sometimes I am very poorly to the extent of being semi conscious and have no one to call on or support network. 

Ho hum! We'll call my attempt at an urgent care needs assessment a fail so far then! It's really not good. I'm feeling a tad frustrated but also that I have been "labelled" due to past mental illness and pushed that way by someone who didn't read my request for assessment and jumped to conclusions and stigma and preconceived ideas played a role. My physical health is the sole problem here. 

[Sunny Clouds]

I wish you lived where I do, because I'd have alternative ideas for putting pressure on the powers that be via local community groups that seem to be have more of a sense of community and empowerment thanks to the pandemic. 

What gets me about all this is that I can see how it happens with financial cuts and every team/department/organisation desperately playing pass-the-parcel, but whose budget do they think it'll come off if you get worse?

One of the most uplifting things anyone has said to me in the last year wasn't a solution to this, just a fellow-feeling.  I was with other members of my local community, chatting in an open-space (2m apart!) and I said about when I was going through menopause a few years back and despite my GP's frustration over it, both the gynaecologists and psychiatrists wrote off PMT problems as simply part of being bipolar.  A neighbour with severe physical impairments looked weary and said "Yes, you're not allowed to have more than one condition, are you?"

I think healthwise it's down to contracting out services and 'pathways'.  Once upon a time, if you went to a hospital, it was like seeing a GP.  The clinics would do their best to network together.   Now what happens is one team sees you and refers you back and your GP refers you to a different team etc.  Loads more work for the GP, health-damaging stress for the patient and a waste of money.

But please don't give up, lovely Fiz.  Fight for your entitlements.

[Fiz]

I still haven't heard back from them and yesterday was another day when I was unable to get up and go downstairs so didn't eat or drink. I booked an online food delivery for today then cancelled it as I wasn't sure if I would be able to get up and open the door. But I am up today and hope to eat before going back to bed pretty soon as I am exhausted. The care act amendments for Covid ended yesterday meaning local authorities can no longer postpone care needs assessments and provision of care due to the pandemic. I'm unsure if there is a turn around time for assessments from the date of request though so who knows whether it's delayed or not?!

[Sunny Clouds]

If nothing else, it may take a bit of time for someone to juggle the budgets.  "Look, we've got to go back to doing these assessment things so we need more money.   Will you hurry up and stop arguing between departments over who's going to give it to us?"

I feel so frustrated you don't live near me so I can't either help or connect you with someone from our community help network.

[Fiz]

Having not heard anything from the Social Worker I had emailed and she answered this morning saying that her team manager has said it will be handed back to the physical disabilities team but the team manager is going to do that and has been on leave since that discussion and returns tomorrow so the social worker will speak to them tomorrow and will update me on the handover after that. Hopefully I won't have to queue again to be assessed by the physical disabilities team. I have managed to get up yesterday to feed myself and today to fetch drinks but otherwise have been in bed. I'm feeling so unwell currently, I may be pushing my adrenals a bit hard currently, I certainly won't be reducing steroids further until I stabilise and function.

[Sunshine Meadows]

 I hope the assessment gets sorted out soon and you get the help you need. In the meantime am worried about how you are able to cope physically. To give you some context when Mr Sunshine fell down the attic stairs, broke a dislocated his ankle we had an emergency assessment done and were town to use our PIP to get help. Our situation was temporary and we got through it however at the time I was desperately upset and waiting months to have a unhelpful outcome. Right now would it help you to get a worker from a care agency to come to your house for a couple of hours and set you up with food, water, tea coffee a kettle and medication in your bedroom and downstairs near the sofa?  

I dont really know what care people are entitled to, it does seem to me like the focus is on gadgets and hand rails etc. The time when my Mum who was severely disabled who had a home help who cooked and cleaned are long gone - they should bring that service back after all it kept people out of care homes.

[ditchdwellers]

I'm so sorry you're being pushed from one service to another at the moment. Hopefully you will be assessed soon.
In the meantime, would it be possible to have a lightweight jug of water beside the bed and a glass or mug so that you get a drink? It could be filled from the bathroom or topped up from a bottle. If you are worried about the water getting dusty, you could cover it with a cloth or tea towel. 
How about a box of individually wrapped flapjack or cereal bars if your diet allows by the bed, which could provide you some energy? 

I realise this involves having to shop or cook, which you certainly don't sound like you're up to presently. The sooner this assessment happens the better. 

To answer Sunshines query about what a PA can do, providing it's written in your care plan,  they can take you shopping, to the cinema, cook, light housework, laundry, change the bed, go to medical appointments with you, assist with paperwork etc. My PAs have done all of these things and more for me. The key is making sure that your care plan is flexible and will accommodate a broad range of activities and allow for fluctuating conditions (if yours does).

[Sunny Clouds]

Playing with ideas, and I may be barking up the wrong tree, but would there be any possibility of getting this seen instead as a 'health' issue not a 'disability' issue & therefore try for some sort of personal health budget?  I don't know what's available these days, but maybe worth seeing if anyone knows if PHBs are still available and if so if you can realistically get one.

The other thing, again a long shot, and just a stop-gap, is that where I am there's been a flurry of community activity in the pandemic with people encouraged to help others and I wonder whether at a very basic level there might be a volunteer who might do a little even if it's not much.  Not the same as the level of proper caregiving but I'm seeing it as like bunging a couple of field dressings on a soldier's wounds whilst you sort out transport to a field hospital.

Oh dear, Fiz, we obviously haven't disagreed on enough things over the years, since I feel upset to think you're going through this.  My feelings won't fix it for you, but I want you to know that it's not that no one out there cares.

[Fiz]

I do have a 1.5 litre bottle of Volvic touch of fruit sugar free water by my bed but if I have a run of bad days in a row that does run out and then I am stuffed. When I used to have a bad patch if I had a better day I would know that I had turned a corner and things were on the up but now I can be slightly better one day, be able to get downstairs for an hour and eat a meal and the next day I am floored again and am bed bound. It's the completely not knowing what tomorrow will be like that's so difficult. I am actually throwing food away for the first time in my life because I haven't been able to get downstairs to it or able to eat it before past its use by date. 

I really want to employ someone (with direct payments) who is DBS checked. I'm finding it hard trusting people with my home and me if I don't know them from Adam. I have just booked a cleaning company to come next week for 3 hours work then 2 hours fortnightly ongoing because I am just unable to care for this house. I feel totally embarrassed that I will have a cleaner but don't work! It's something that my unofficial foster Mum has urged me to do though for years and I have been putting it off. 

I have to pay people to do every little thing that needs doing and I hope that all of these costs will be taken into account when they decide whether I pay all or some of my care costs. For example being cold can bring on an adrenal crisis because I burn cortisol keeping warm so my heating bill is significantly higher than before I developed adrenal insufficiency and I hope that is taken into account when they decide how much I pay. Plus I can't cook presently and ready meals and prepared veg are an expensive way to live so my grocery bill is shockingly high now. I worry that if they say that my PIP needs to pay for my care then other things that I pay for because I am too unwell to do them or need things for my health then these other things will have to go. Will I be left with no petrol money and be unable to visit my children? Part of me fears if they bill me highly, losing the other things my PIP already pays for will be too high a loss for me and I will turn down what I am assessed as needing and I will be left in bed dehydrated and very ill for days at a time ongoing! 

As said, the days when they helped you maintain your home are long gone. You have to live as Miss Havisham now. Looking at it the Conservative way, why should other people pay for my home to be clean? So the assessment may see that as unecessary expenditure who knows. 

I used to work in care management but was in a hospital discharge team and we'd issue and fund a 6 week package of care to ensure a swift discharge leaving community teams to do the financial assessments and I have no idea of what care was provided after the six weeks plus austerity has landed since my working days and I am sure people have far less care than they used to. Even in my working days we only arranged personal and nutritional care plus sometimes for the rehab/physio teams to visit to improve mobility or confidence.

[ditchdwellers]

Fiz,
I have a weekly cleaner for 2hrs too! Dismiss from your mind immediately that it is somehow shameful to employ someone to clean your home.. Professional cleaners take great pride in their work and believe me when I say most of them would have been confronted with conditions far worse than yours. There's no need to feel guilty. 

When it came down to my financial assessment, I included increased heating costs due to dysautonomia, wound dressings, incontinence pants, travel costs for hospital etc,. I'm sure you could include prepared food and ready meals in with that too. Wheelchair servicing and maintenance would also come into this. I can't think of anything else at the moment. Hope that helps!

[Fiz]

That definitely does help DD thank you. There's so much that I have to pay to get done because I can't do it myself. I will definitely need to write a list before the financial assessment.

[Fiz]

My adrenal insufficiency has resolved! Currently I am experiencing steroid withdrawal symptoms which overlap with low cortisol symptoms so I am not feeling great but I am better than I was and I haven't been bedbound or had hypersomnia for a few weeks. I am thinking that all being well I may not now need help with nutrition and personal care after all of this. 

Looking back at how incapacitated and unwell I have been and the fact that I reached out and asked for help with my care in November and five months on nothing has been actioned shocks me. That people are just left, bedbound, and unable to care for themselves just horrifies me. 

So despite (hopefully) not needing help now I felt that I should officially complain in the hope that things will be changed for other people and other people will get the help they need and won't be left like I have been. 

On Sunday I emailed adult services complaints to complain. Yesterday late afternoon I had an email response saying my complaint/feedback has been passed on to the mental health team. Why the mental health team? Because the case had mistakenly been passed onto them rather than the physical disabilities team and they should have noticed the mistake sooner or dealt with it sooner? I get the feeling that my complaint is already not being taken seriously? 

Who should I be complaining to if I want this taken seriously? It would be nice to get an apology but my aim is to prevent this happening to someone else.

[ditchdwellers]

I think it's time for more drastic action. When I was having issues with social services and felt like I wasn't getting anywhere with complaining, I contacted my local MP.  She was brilliant and I soon got access to the services I knew I was entitled to. 

I'm so pleased that you're feeling a lot better and completely agree that a complaint is in order. Councils tend to pay attention when an MP contacts them, whereas they feel they ignore the rest of us completely. Go for it!

[Fiz]

I think you're right DD. Today I plan to write to my MP he's the only MP who refuses to use emails so it will have to be pen and paper and go out and post it but today feels like one of my better days so I think I can manage that today. The cleaners are here for an hour this morning so I shall use that hour to get that done. Hopefully they will take less than 20 working days to respond to an MP but most importantly make sure they don't leave anyone else bedbound unable to access food or water for five months without responding.

[oldtone27]

I agree with DD. Remember you are dealing with bureaucracies which tend to want to avoid action. As an ordinary member of the public your letter/email will be dealt with firstly by someone at the bottom of the pecking order. They may pass it up the management line but each step introduces a delay. Eventually it might reach someone who can deal with but by then its a rather old complaint so can be dismissed as out of date or no longer relevant.

By contrast your MP's letter will go to near the top of the pecking order and is likely to be marked, 'deal with this and let me know result'. It then progresses down the pecking order and is actioned.

Successful outcome not guaranteed but attention is.