Carers Rights Day 2018

 – by Lynn Black, Information Officer

Did you know that each day in the UK, 6000 people become carers?

Today, for Carers Rights Day, I’m sharing some of your options if you’re a carer for a loved one affected by Motor Neurone Disease (MND).

Now, if you’re looking after someone with MND – you may be their spouse or partner, their brother or sister, or a parent or child – you probably don’t think of yourself as a ‘carer’; the person with MND is your loved one and you wouldn’t think of doing anything other than looking after them.

However, you’ll also know how hard and tiring this can be as MND progresses. Some people are fortunate to have lots of family and friends, or local care agencies to support them, but for a number of reasons this isn’t always the case.

In fact, caring for someone with MND can become so demanding that many people have to give up work to look after their loved one. This can have a huge impact on your finances and on your mental health.

There are several carer-specific organisations out there, such as the Carers Trust and Carers Scotland (part of Carers UK), who can offer support and advice, but it’s often just that.

Following a Social Work Care Assessment – which you are entitled to by law – you and the person with MND will be advised on the level of help deemed necessary and the costs which may be associated with using these services.

Up to a point, this is all good and well, especially if help is available. However, specific help tailored to suit your needs, can be more difficult to find as it often depends on what help is available in your area.

It can be the most difficult to find help if you live in a rural area. This is because many care companies only operate in the larger built-up and suburban areas where they can recruit staff.

What’s more, people with MND can end up staying in hospital longer than is actually required because there is no one available to look after them when they get home.

Occasionally, they may be transferred to a care home for the same reasons. It’s possible to look for care homes and care agencies on the Care Inspectorate’s website, where you can check out reviews and reports.

Where possible, our very own MND Scotland Research and Education Officer, or the MND Clinical Specialists, can offer training to the staff of these homes as many of the staff will not have heard of MND or looked after someone with the illness before.

In an attempt to make life a little easier for people with MND and their ‘carers’, MND Scotland is able to offer many services which could offer support.

Our Welfare and Benefits Officers help families to apply for the benefits which they are entitled to. There’s no need to struggle with complicated forms or difficult phone calls to the DWP (Department for Work and Pensions) or to the new Social Security Scotland agency.

Many people think they aren’t entitled to any financial help, but some carers may be entitled to Carers Allowance, and your MND Scotland Welfare and Benefits Officer will keep you right about this and any other benefits you may be entitled to.

Earlier this year we launched our brand new Advocacy Service, which aims to act as a link between those affected by MND, the MND Clinical Specialists and local services.

Our MND Scotland Advocacy Workers are on hand to help make timely referrals to local services and to help expedite many issues which people with MND can face, for example priority for suitable accessible housing.

The whole area of Health and Social Care is very complicated but there are some good websites which offer advice in a clear and comprehensive manner. These include Care Information Scotland and Citizens Advice Bureau.

We know the toll that MND takes on those affected, including their families, and that’s why we are keen to offer other support services such as Counselling and Complementary Therapy to help make life a bit easier for people caring for a loved one with MND.

Our services are available to everyone affected by MND, not just the person with the condition. We are always looking for ideas on how to support you in your caring role, so if there is something you think would help which we don’t provide, please do let us know.

Likewise, if you’re a carer who’s not sure where to go next, drop me an email at info@mndscotland.org.uk or give us a phone on 0141 332 3903 for a chat about how we could help.