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Care assessment. Now what happens? - Carers UK Forum

Care assessment. Now what happens?

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You may have seen from my previous posts that I am a full time carer for my wife who has learning difficulties & co ordination problems & is prone to falling over, has no road sense, cannot find her way around when outside etc, cannot cook, shower etc. As well as this, I myself am substantially disabled but have stubbornly refused to give in to my problems and insisted on our independence. Until a week ago that was when I had a little problem myself. I have major abdominal problems after having surgery to remove a huge part of my small intestine & all of my large intestine due to Gangarene. Despite this, I have continued to care for my wife. With my seriously compromised digestive system which stops working altogether about twice a month & I have to stop eating for 2 or 3 days until it works again. I have never told anyone this apart from my doctor & the hospital of course & it usually rights itself after between a day & a week. OK thats the background, now to the reason for this post. Last week the inevitable happened & my digestive system stopped working and would not restart, so I saw my doctor as an urgent appointment to ask him for some medication to help & he refused. He said there is no way I can do that, I am going to send you to hospital right now. I of course refused saying I could not leave my wife alone for more than an hour. The doctor again said, you have no choice. So while he was ringing the hospital to arrange my admittance, I frantically rang all my family & thankfully, my cousin said she would drop everything, leave the family to cope & move into my home to care for my wife. What a relief! So of course I told the doctor I would go to hospital after all.
Basically, I know they can't do anything to cure the problem, its just a case of supporting the body with a fluid drip, a gastric nasal tube into the stomach & then wait until everything starts working again. This can take anything from a day to a month. If after this time and only after this time, they would say that the diagnoses was that it was unlikely ever to do so and at that point they would attempt a rescue operation. They said by this point it would be a no choice life or death situation where they had nothing to lose and any attempt was worthwhile. Luckily I have had this stop/start thing happen a few times in the past & it usually corrects itself after about a week. Amazingly, this time, after only 48 hours of hospital care, everything started working again and because they knew it was driving me crazy with worry, they said I could go home to care for my wife as long as I only did the essential things and no housework, shopping etc. So thats the why, now for the what. I read the advice section on here & it said I should apply for a care assessment, so I contacted social services & they said that they knew nothing at all about us and we were not even on their records as being disabled! Thats what you get for trying to do your best & not bother anyone I guess! Anyway, they said the best they could do was to arrange an assessment for both my wife & myself and booked the first available appointment which was in about 2 weeks time. So what should I expect from this care assessment? Do I just tell them of my wife's condition & mine or do I need to get a medical report from my doctor? Or will they do that because a private medical report costs £120 at my surgery so £240 for the both of us. Although I own my own sheltered housing property & have modified it as far as possible for our use with walk in shower/wetroom, stairlift etc, the only place to store my electric wheelchair is in an enclosed space just inside the main front door which I have to power the wheelchair front wheels over a step & then actually lift the chair back wheels while taking an extreme right turn to get the chair in the wheelchair store which used to be a dustbin store originally. Very far from ideal at the best of time & extremely painful especially since I have severe arthritis as well as a collapsed abdominal wall. I thought I had 3 massive hernias which lets face it, are not difficult to spot, but on examination, the hospital said I now have a further 2 hernias since my last visit and more or less forbade me to use the chair. Great idea in principle but I can't walk without it so I now have to ring a family member to get the chair out & put it back for me if I need to go out. The doctor said in my case, the hernias were totally inoperable & any further damage I do is forever. So I can understand why they have told me I must not use it. A further complication is that my anti inflammatory medication is damaging what's left of my stomach & intestine so they say I have to stop taking that as well. But if I do that, my joints swell up & I can hardly move so it looks like we may both be needing help soon!
If I tell all of this what I have told you to the care assessor, is that enough? Will they be able to see from my description that after getting no help for years, that we may get some after all? At the moment, all I have ever been offered is the assistance of the site warden. Since I own the property, this would cost me £8 per week. When I asked them what the warden did for my £32 a month fee, apparently you get a daily welfare check. No help with shopping or cleaning then I said? No they said. So basically you ring my doorbell once a day and I have to come downstairs on the chairlift to answer the door. They they ask are you OK, you say yes and the go away! Is that it for my £32 a month? What happens if I say, no i bloody well am not alright? Since they don't offer any practical help that I can see, I told them to stick the warden service. Lets hope this assessment will at least give me ideas as to how I can continue to provide care even if they don't offer any themselves. Any advice as to what to expect from this assessment process and how it went for other forum members would be welcome. What do I need to emphasise or should they be sufficiently trained to see for themselves. Sorry for the "War & Peace" length question, but I thought a good explanation of our problems might help. THANKS!
You are clearly doing your very best in incredibly difficult circumstances, and I take my hat off to you! I'll make a few suggestions to consider. Firstly, your GP should have rung Social Services immediately he knew you were in trouble to arrange emergency care for your wife, or carers popping in and out a few times a day. The hospital should have arranged for a needs assessment to be conducted before they let you out, to make sure you had everything you needed, especially an occupational therapy assessment, so give the hospital a ring and speak to PALS (Patient Liason) and ask if yours can be done immediately. Get your GP to ring Social Services and tell them to get out to see you Tuesday by the latest, this is a crisis situation by the sound of it. When they come out, they will ask the usual name/address details, ask what is wrong with you, and your wife (as you are both disabled they should do two separate assessments) ask what you struggle with, need help with, and then discuss how they can help you. No need for any expensive reports etc., it's a simple procedure as a rule, help may depend on your financial situation, not sure. Before they come, think about what you struggle with most. The chair, shopping, cooking, whatever. What would help you most. Hope that helps.
thank you for your help & advice. I would say number 1 would be the chair, number 2 shopping since they have told me I must not lift anything. I usually have a shopping bag on the back of my chair and lift it off the chair and onto the stairlift which then takes it upstairs for me. This has been painful for ages now but if I follow instructions, I won't be able to do that. I did think I could get my shopping delivered as a short term help but would they just dump it at the door or would they carry it upstairs for me? Of course these are short term, stop gap ideas & its clear something will have to be done on a more long term basis. Whatever help I get I would like to target very carefully as I would have to pay in full from my early retirement pension. One of the best options would be for me to move out of my sheltered housing flat & into a bungalow, then I would be able to get the chair right inside and would not have to lift anything heavy, I could take it out one piece at a time over the course of the day. The trouble is, because of my savings & the fact I own my own property, I don't think I would qualify for a disabled bungalow like the council have and I have not come across one privately built. I have looked at bumgalows but they are far too big for us and of course have no supervision. So I will do as you say and think carefully what we need the most urgently and see what is offered if anything. Even some kind of an emergency call number to be sure of immediate help the next time I get taken away from home would give piece of mind. I will chat to my Doctor on Monday & see if he can speed things up a bit. The trouble is, he is only a locum as my lovely lady doctor is on 6 months maternity leave. I also have a friend who works in the PALS office as receptionist & care co ordinator go between patients & staff. Never thought of speaking to her. Thanks for some good ideas.
I have had a number of operations in recent years, and found Tesco online brilliant. There is a place on the order form where you can give special instructions - for a long time mine said that I'd just had a knee replacement, knock and wait. They were so kind, and althoug the second op was over a year ago, they still ask how the knees are going etc. They will carry the shopping into my kitchen - not sure about stairs though. Do you and your wife have a "Lifeline" pendant? If any emergency arises you push the button on a pendant, it goes through to a call centre, and they will take action as required. When you sign up for the scheme, they ask you who to contact first. Mum is prone to falls and has special medical needs, so needs to be checked over by ambulance staff, and picked up carefully. So the Lifeline call the ambulance and then call me. The peace of mind this gives me and mum is enormous.
JUst so that you know, there is a charge for the Lifeline and you do need to be connected to a phone line.
I think mum's Lifeline costs about £3 per week, which is very good value for money when you consider it gives 24/7 cover. Perhaps I should also have said is that your phone is changed for a different one, quite a large unit which has a large button in one corner, so if you are in a panic you don't even have to dial a number - just push the large button and then the phone works like an intercom, you get straight through to the operator - the base unit has a built in microphone so you don't even have to pick up the phone. So if mum fell in the hall, she could push the button on the Lifeline pendant, they'd come through on the intercom, they would ask what's the matter, she'd say I'd fallen, they would then ask for more information and call the ambulance - All with the handset still in place. Incidentally, I think it would be a good idea for you to have a benefits review, to make sure that you are receiving everything you are entitled to. Some disability benefits are NOT means tested, others are, and it can become a minefield. If your wife has severe learning difficulties, then she is exempt from Council Tax.
I have a care phone thanks. I bought it outright & used to pay around £100 a year for monitoring but all they ever didi was to relay messages to your nominated contacts. Since I owned the phone, I thought I can do that myself! So I reprogrammed it to ring my emergency carers direct so it bypasses the call centre & first calls my mobile as I am the main carer. Then it calls my cousin who looked after Sue for me while I was in hospital, then it calls Sues brother. It never gives up so if I don't answer mine it straight away calls the next contact & continues to do so unil it gets someone. Sue prefers it like that because she knows that when she presses her pendent, she knows the person who will answer is a family member. Plus it saves me £100 a year which an added bonus of course!
I didn't know you could buy your own.
Yes I bought ours from the BT shop. Not sure if they sell them now as I bought ours about 4 years ago.
We seriously urge you to check and challenge if you have been assessed correctly.
If you feel that you have not been assessed correctly - contact your MLA and get them to fight your case with you. Get this in place before you ask for a reassessment and make sure that someone from the MLA's office is with you at all meetings. Use a voice recorder if necessary!
I also feel that we need to get away from the word 'carer' as this is often incorrectly used, especially by 'Health Care Professionals' and Trust Boards as a fit all label and is detrimental to an accurate and correct domiciliary care assessment for personal services. Note that this is nothing whatsoever to do with 'critical care needs'! By using the terms 'care' and 'carer' Trust Boards are swerving the statutory law and are only assessing on a 'critical care needs' basis related to a severe illness. However, they are using the Domiciliary Care budget to pay for critical care needs. During the past 5 years we have repeatedly been told that NI Trust Boards do NOT fund domiciliary care and, indeed, at my husband's reassessment in January this was categorically stated to us by the Head of Services for Community Care in our area. Basically we are all being robbed blind by the NI Trust Boards and they are without a doubt breaking the Law. Domiciliary Care Support should only be used for personal services, i.e. shopping, cooking meals, cleaning, social activities etc. It is not medically related and the person does not need to be ill, i.e. disability, the elderly and the frail most likely will qualify.
Let me explain and I would then urge you to do some further research yourself lots of information on the Internet, and get a copy of the Guidelines that the NI Trust Boards are compelled in Law to follow. Here is the name of the Guidelines that you need - this is Statutory Law and MUST be followed by NI Trust Boards and HCP's:
My husband's reassessment was a farce and it has caused us much anxiety and stress and continues to do so. We have and are seriously challenging the outcome of the assessment and although it is a very slow and difficult to do process we would urge each and every single one of you who requires domiciliary care/support to do the same. You are most likely entitled to this in law and do not be put off when HCP's tell you that you are not - you most definitely are if you meet the criteria laid out in the Guidelines that I have outlined above. Read the Guidelines thoroughly and you will come to the realisation, just as we have, that 'critical care needs' is not mentioned at all!
The term 'critical' or 'substantial' is used in the context of what LEVEL the assessed person is re a RISK ASSESSMENT for them to be able to remain in their own home and continue to live independently with dignity, control and freedom of choice.
To take this concept of INDEPENDENT LIVING one stage further you must familiarise yourself with the latest legislation of TRANSFORMING YOUR CARE.
The Trust Boards will absolutely hate this as it is a 'PERSON CENTRED' approach and it will in effect take all of the power away from the Trust Boards and HCP's. YOU, each and every one of us, will have the power to make decisions regarding care and/or support required.
DIRECT PAYMENTS: this is the way forward for you to have control and the Trust Boards and HCP's cannot stop you from having DP as this too is laid down in Statutory Law.
Do your research on the internet on all of the keywords I have provided and you will be amazed by what you read.
We continue to fight on regarding my husband's reassessment and we shall not give up. The Law Centre NI have now taken on our 'case' and we are heartened to learn that there has already been a Judicial Review in 2011 re Domiciliary Care and NI Trust Boards were told by a Judge that they were breaking the law and that they should implement the Guidelines, as mentioned previously. Of course, the Boards are so arrogant that they have even ignored a Judge's ruling. We are informed by the Law Centre NI that our 'case' may well end up as a Judicial Review and if this is needed, so be it.
However, we say again - find out your facts, check legislation, contact your MLA's and under no circumstances give up!! Domiciliary Care is your entitlement!! Take a stand now and start reading up on your rights.....