MS Society UK | Forum

Hello, new forum member seeking advice for my sister

I live in Belgium and my UK-based sister has had Progressive MS for some years. I’m really worried about her current situation and not sure who to talk to in order to help her. She used to be visited every month by an MS nurse but has not seen one in months, possibly the result of Covid restrictions, but I honestly don’t know.

She is just out of hospital after 8 weeks following a fall at home and her mobility has been compromised now to the point that she is catheterised and cannot get out of her bed or chair unaided any more. I won’t go into all the details here, but suffice to say that she is not coping at all well and with the inevitable brain fog, is not very well able to articulate what she needs. Her OH has pretty much abdicated all responsibility, despite being her named carer so he is not interested in trying to help find solutions to the situation. He has depression and alcohol issues of his own - not that it is an excuse. They are problems he has had for years, since before my sister became ill.

If anyone can point me in the right direction as to where we can start to get her some proper help I would be really grateful.

ok she needs to ring her local ADULT SOCIAL SERVICES team. they should come out and assess her for care needs. IF SHE HAS MONEY though she will have to pay. If she has money she can ring any number of places who provide care.

the hospital really should have spoke to her on discharge but if her husband is named carer they will assume she has care.

she can find the number for adult social care in here area her local council should have the number. sounds like her partner needs help too.

IF HER PARTNER is being paid as carer then he needs to step up at least for now until she gets proper help.

x

Hi, like Crazy Chick says, the people to call are the nearest Social Services team. Now they can take a while to respond, so PLEASE PLEASE lay it on how very URGENT their assistance is needed ASAP.

Hope your sis gets the help she desperately needs very soon.
Boudsxx

Definitely try getting some urgent help from Social Services. It’s a safety issue if she isn’t being cared for and is unable to care for herself.

Social Services do a ‘Care Assessment’, they identify what support an individual needs irrespective of who is to pay for such care. If she’s unable to explain what help she needs, all she needs to do is phone the County (or the London Borough, Metropolitan or Unitary) Council wherever she lives. Ask for Social Services for Adults, tell them she has Advanced MS and needs help. They should become quite quickly aware that she’s unable to explain what help she needs. Or of course, you could try ringing, they may not be able to speak to you about your sister (strict Data Protection laws prevent it). But you could explain that your sister will phone, she needs help but can’t think straight or explain herself. Also tell them that she has a partner but he is not helping.

Once they’ve done an urgent care assessment, they’ll make recommendations as to what she needs. If she has no money (or just state benefits), the chances are they’ll pay, for at least some, if not all care. But if she has more than £23,000 in savings she’ll not qualify for paid care. If she has less than £23,000 but more than about £14,000 (sorry, can’t remember the exact figure), she’ll probably get some help but will have to contribute.

As Bouds said, care can also be provided from a local agency. You (or she), can arrange this irrespective of the local Social Services department. Just do an internet search for (eg) ‘Care Agency’ together with the town she lives in.

If she’s over Pension age, the Pension Service can help to ascertain what funds she has and assist in claiming for anything she may be entitled to. Otherwise, you may be able to get her local Citizens Advice Bureau to help her.

Best of luck.

Sue

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