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Should employers do more to help full time carers?


Nigel is a Practice Manager and has been with Nationwide for 31 years in a range of roles, including; Team Manager, Operations Manager, and Programme Manager. Here he shares his experience of being a full time carer for his son Darren whilst navigating a successful career.

My experience of being a full time carer

Our son Darren was born with Down Syndrome and unfortunately with it a long list of associated health issues and disabilities. These include; a hole in the heart, hearing issues, poor vision, muscoskeletal disorder and limited communication and cognitive skills.

But none of that has stopped him! He had a full and active childhood and was (and still is!) very happy and outgoing. He loved going to school and college, and doing all the things that an able bodied child would such as school sports days and learning to ride a bike, albeit that it was much more challenging for him.

From mine and my wife Cath's perspective there is no right or wrong in terms of a response to our story, as people’s responses are personal to them. We generally get a mixture of surprise and respect sprinkled with elements of admiration and sympathy.

“ I don’t think we see ourselves as impressively brave or resilient. To us it’s just the way our life is, and we get on with it! In my experience people have a far greater ability to cope, and deal with challenges, than perhaps they think. Once you are used to it – whatever “it” may be – it becomes the new norm. ”

These days Darren's a big fan of all the soaps, but his favourite TV programme has always been Casualty, which he’s been watching for the past 20 years. It means that when we have to attend the many hospital appointments he has, he sees it as a day out and gets very excited by it, which has made things a lot less stressful than they might otherwise be!

He’s now in his early 30’s and is having to slow down a little but he’s still very sociable, loving, and energetic in his own way. He enjoys going to his day centre (or work as he calls it), meeting new people and loves going on holiday.

The ups and downs of being a parent and full time carer

Our most challenging day was quite recent, in Feb 2015, when Darren was diagnosed with Testicular Cancer. Coming to terms with that type of news is never easy for anybody, and added to all his other health issues it was particularly challenging.

“ 10 months later, having responded well to the treatment, we received another unexpected shock when tests revealed that the cancer was back, having spread to his lymph nodes.In terms of our happiest memory, it was when we received the news last month that the cancer treatment had worked, the tumour had disappeared and Darren is now officially in remission. ”

But there are also many more positive memories. One of the typical characteristics of Down Syndrome, and Darren, is that they are very loving and expressive and that in itself creates many happy memories and more than compensates for his off days!

How the funding cuts have affected us as full time carers

The cuts have been gradual and incremental over the past 4 – 5 years rather than sweeping and wholesale, and in some ways it can make it harder to absorb as it’s felt like a steady stream. The changes can have a varying impact on carers, ranging from very little to very significant.

“ In our case it’s been things like a reduction of funding for respite care, which results in either reduced support, or increased cost for us. In addition, the number of days Darren can attend his day-care centre has reduced and the transport arrangements have changed, meaning he gets picked up later or dropped home earlier. ”

Every time there’s a change of that type it can have a huge impact on our working patterns. My wife Cath and I have both had to adjust our working arrangements to cater for the fact that there’s less formal support available. Fortunately, both of our employers have policies and flexibility that makes that possible. For us, the concern going forward is that there appears to be no end in sight, so we’re not clear on where or when the cuts will end.

Should employers do more to help employees who are also carers?

While I’m not sure employers have a responsibility to do more to help employees affected by the cuts, I do think that they have a responsibility to understand what’s happening and the impact it may be having on some of their employees. That way they can at least consider whether more can be done, and in turn educate managers who may be managing people affected by changes. After all, many managers will have limited experience of managing people with caring responsibilities and won’t therefore understand how complex it can be.

“ As a carer I don’t want to receive any special treatment or favours from my employer, all I need is a degree of flexibility, and fortunately Nationwide has the organisational values and supporting policies to provide that flexibility. ”

The secret for us has been a combination of having understanding and flexible employers; Cath works for Waitrose, part of the John Lewis Partnership, who as another large mutual are very family friendly in their policies. We also have strong support networks, both formal and informal. The formal element is all about finding out what support is available i.e. respite care, and then using it, and the informal element is our extended family who are a fantastic source of both emotional and practical help.

“ I work a compressed 35 hour week over 4 days, giving me one day ‘off’ per week. That day is used in a variety of ways for things like looking after Darren and giving Cath a break, or taking Darren to one of his many hospital appointments; we have a minimum of 11 appointments to attend every year - often more. ”

Sometimes that day just allows me to take some time out for myself to recharge my own batteries. The flexibility that my working pattern provides coupled with Cath’s flexible arrangement has been a real help.

Nationwide and full time carers

Nationwide has some great policies, such as flexible working, that are very valuable to me and probably a great many others; but there’s always more we can do to raise awareness at a more local level.

“ Ultimately flexible working shouldn’t be seen as a ‘special favour’, or an indication that someone working flexibly isn’t doing as much / working as hard as other employees. In my experience the effort people are prepared to give is often increased and improved by the increased flexibility. ”

If I had to choose one thing that’s kept me at Nationwide it would be the people; I’ve worked with many excellent and inspirational colleagues over the years with the common denominator being a huge desire to do the right thing for our members in a collaborative way. But for me it’s more than just that; beyond the people the other things that have kept me here so long have been the opportunities I’ve had; the values here very much match my own, I’ve therefore never felt the need to look elsewhere.

What's the most important thing you look for in an employer?


  • Jim

    My 12 year old daughter has Angelman Syndrome which means the support requirements on my wife (who works), me, the NHS and Wiltshire Council are very significant.

    Having an employer who can be flexible with working arrangements has been critically important for my family over the last 10 years.

    And I agree, Nigel, the levels of support provided are steadily reducing which either means family members do more or the disabled person gets less support. Fortunately my daughter is settled in a great school.

  • Duncan

    Really enjoyed reading this. As someone who grew up alongside a boy with Downs Syndrome called Sam (we were his respite family), I have a bit of an idea of the extra considerations a parent has to contend with when they have a child with Downs Syndrome.

    Sam's mum was a single mum and a successful manager of a hospital ward so she led a busy life and it was so clear just how much she valued having the support that we were able to provide.

    We were like a second family to her as being Swiss, she did not have her family close by. It just gave her that opportunity to recharge!

    As I grew up, I often chatted with her and got some insight into the challenges/concerns that she faced, the main ones being funding and ensuring that Sam will be happy in his older life when she is no longer around!

    Its a huge responsibility but the joy he brought to her life more than made up for it! I'm sure that any support a employer can provide to lessen that burden for a carer, however slight, goes a long way!!!

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