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Hello there, I need advice - Carers UK Forum

Hello there, I need advice

Tell us a bit about yourself here.

I'm new to this forum but really need some help.

My wife has been diagnosed with psoriatic arthritis and hyper mobility, due the extent where even the smallest jobs leave her in a huge amount of pain and anything more than a short walk is impossible.

On top of this, she is also prone to fainting, I've often entered a room to find her passed out on the floor.

What makes this situation extra difficult is the fact that we have two toddlers, aged 3 & 2 and I work 12 hour shifts 4 days a week.

We have been waiting for the results of her PIP assessment for around a year now and have only just heard from our local social worker in regards to home help.

The council has agreed to a pendant alarm being fitted for when she faints but we have to wait for it. A package of care had been agreed but the agency responsible for setting it up has been unable to arrange care around my 4 on, 4 off shifts pattern.

This morning we had a visit from a council worker responsible for the direct payments system, where we would act as employers to any care worker. In the mean time,
I'm having to work 48 hours a week and act as a full time carer whenever
I'm home which is making me ill. I've also had to miss a lot of work on the days she isn't physically capable of looking after the children.

Naturally, my employers aren't happy at the amount of time I've missed and would like a meeting with me on Friday at 10am. I also have to work 12 shifts the next 2 nights when
I know my wife is going to struggle to look after them which makes me feel even worse.

I'm now worries I'm going to lose my job on Friday even though I've discussed the situation with them several times.

Does anybody have any advice? Thanks in advance.
Hi and welcome.

Oh, wow, your situation sounds horrendous. I'm in Australia and so can't offer any practical advice, but do you have any friends or family who could assist a little until you get a care worker in place?

Other than that, all I can do is stress that you must try to look after yourself as much as possible. Cut corners as much as you can to try and take some of the strain from yourself. You'll hate me for this, but try not to worry about Friday. You are putting a solution in place as fast as you can and hopefully your employers will understand.

Someone will pop up here soon who can give you some more practical advice.
I'd suggest that you contact the Carers UK Adviceline -contact details are here viewtopic.php?f=24&t=24018

They are very good at advice connected to all aspects of caring. I've not been in the same situation myself so please don't quote me on this, but I'm pretty sure that your employers must take into account your rights under the Disability Discrimination Act (as a Carer I believe you qualify 'by association').

Hopefully someone else will be along who has more experience in this area than I do.
Yes, they can't fire you if you have been taking time off for domestic emergencies, unless you have taken a truly excessive amount of time, and even then you are entitled to a three stage process of written warnings first. However, you may well want to request more flexible working arrangements, such as shorter shifts, p/t work etc. and you have a right to request this.
By the way, the PIP result has been unreasonably delayed, I would check to see if something hasnt gone astray.
As you have young children who would be in danger if anything happened to your wife whilst they were in their care, this means that Social Services should be acting as a matter of greatest urgency. They also have a duty to you as a working carer. Have you ever heard of a "falls alarm". We have a member here whose partner has recently been supplied with one - no point in your wife having an ordinary Lifeline if she can't activate it!

Try and contact social services to arrange a domiciliary care package, where they drop in, say for instance morning, noon and night also should have access to an occupational therapist to assess your wife's needs around the home.

If social services can put domiciliary care package in place then ask them as an when direct payment can be arranged to inform you ASAP.

Contact GP to re-assess your wife's sporadic faints include full blood test and urinalysis.

In regards to Pendant alarm also ask for a key entry system where a code is entered where a key can be accessed if your wife is alone or in danger at least a friend or family member can access in an emergency.

Possible contact citizens advice for extra assistance as you are definitely entitled to benefits for yourself and also possible funding for respite periods for you and children so your health is also considered.

There are also agencies that can also help with your children needs which May comes under direct payment allowance and does not hinder your benefits.

Citizens Advice is a free department and opens 0900 am Monday to Friday get there early as first come first serve.

Your not alone we are all here....

This sounds incredibly tough. First and foremost, I would suggest looking at your rights at work as a carer:

http://www.carersuk.org/help-and-advice ... and-career

What could work do to help you? It will help your case if you could suggest something - unpaid leave, more flexible shift pattern etc etc. It sounds as if you may need a bit of time off work to sort out a care package that works for your family.

If you are getting direct payments from Social Services, you have the right to go to another care agency if the first one cannot meet your needs, or employ your own carers. Can Social Services suggest another agency you could try? I would also ask them for an OT assessment - would grab rails / bathing aids help your wife?

I do wish you luck for tomorrow. Please let us know how you get on - not an easy situation for you all.
Anne x
I can't add anything to the advice given, because I don't know what's available - I can only say that your situation sounds a nightmare, and I am so sorry that you are having to cope with it.
I would not expect SSD to take the children into care without trying absolutely everything to find ways of keeping the family together, which is why I suggested contacting them. Often there are various resources available in a community which are not always publicised, SSD are the "gatekeepers" for confidential information like this. For example, they may have someone who could act as a sort of child minder, to give a regular break to the family, perhaps one or two afternoons as week. Or they may be able to arrange a free nursery placement. That's the sort of thing I was thinking of, just to take a bit of pressure off the family.