Taking time to care for the carers

Vicki Lee, who is carer for her son, William, 12, who has Periventricular Leukomalacia (PVL) and Aut

Vicki Lee, who is carer for her son, William, 12, who has Periventricular Leukomalacia (PVL) and Autistic Spectrum Disorder (ASD).

There are an estimated 6.8 million family carers across the country, providing care worth around £132 billion a year. But all-too often the needs of those carers themselves can get overlooked. Sheena Grant reports

For years Vicki Lee had juggled working full time with caring for her son William, who has a range of health needs associated with being born three months prematurely.

But by this summer she had to admit defeat. It just wasn’t possible to carry on doing the job she loved and give William, now 12, the attention he needed.

So a few months ago Vicki, who lives in Stowmarket and is a single parent, gave up work to concentrate full time on making sure her son’s needs were properly met.

“It was kind of ironic really,” she laughs, “as for the last 15 years I had worked in various support roles in special needs education.

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“But when William was due to move school this summer and the timings of his day were going to change substantially I just couldn’t negotiate a change of hours to accommodate it. I really miss my job. I miss the people I worked with and the children but there wasn’t really a choice. I had to put my son first.”

Life is pretty full-on for Vicki and William at the moment as the family has finally been given a diagnosis for the health issues he has had all his life - Periventricular Leukomalacia (PVL), which affects movement and co-ordination, and Autistic Spectrum Disorder.

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“As a result of those diagnoses I’m particularly busy just now, organising appointments, chasing things up and liaising between health and education. That’s what takes a huge amount of time, because you have to co-ordinate things and be pro-active in terms of progress and keeping the ball rolling,” says Vicki.

Although life as a family carer can sometimes feel fairly lonely Vicki is far from alone. One in eight people in Suffolk is a family carer, meaning an estimated 77,746 people across the county are looking after a loved one. Nationally, more than two million people take on a new unpaid caring role every year. The value of the unpaid care the UK’s estimated 6.8 million family carers give is estimated at £132 billion a year.

The personal strain can be immense, dealing with emotional pressures, trying to find time for yourself and struggling to navigate the maze of services and entitlements which mean it’s all-too easy to miss out on financial and practical support - whether you’re new to caring or have been doing it for years.

It’s something caring organisations have been highlighting this week with Carers Rights Day, an annual event organised by Carers UK and promoted locally by Suffolk Family Carers.

Those pressures are something Vicki is very aware of.

“You never know what life has in store for you, whoever you are,” she says. “Many families who end up in a caring role will have little or no warning before they fall into that way of life.”

Because of his premature birth William was in hospital for the first 17 weeks of his life and was still dependent on oxygen when he was finally allowed home.

“He was born at 28 weeks and we did not know if he would even survive initially,” says Vicki, who also has a daughter, Joanna, who has just started university.

“Most of the issues we have dealt with have been around delayed development as opposed to it not happening at all, which is to be expected given how early he was born. He has always managed being in mainstream education with the right type of support structure in place.”

The PVL with which William has recently been diagnosed often occurs in premature babies.

“It causes physical symptoms and means he has weakness down his right hand side,” says Vicki.

“For most of his life we’ve just been tackling the issues as best we could but what will make a big difference, now we have a formal diagnosis, is having a name for something to help us find out what we are entitled to in terms of support services.

“There are a lot of unknowns ahead of us and, of course, as a parent that is a big worry.”

Since she has given up work Vicki says she has become more enlightened about carers’ rights and has been more able to get involved in activities offered by Suffolk Family Carers and other groups, which have made a big difference to her.

“It’s just nice to have friends who have similar issues and to be able to talk to people who understand,” she says.”It’s really important to be in touch with other families that have additional caring roles on top of being a parent. There’s not always a lot of understanding if you’re not in that position yourself and meeting others makes you realise you are not alone. You know these people are not going to judge you but wider public might. It hasn’t happened in my case but know families where it has.

“I’m keen to help others in a similar situation now and promote causes such as Suffolk Family Carers and Carers Rights UK, which is a national organisation. Everyone wants the very best for their child but also what they, by law, are entitled to in terms of education, support and health services.”

The support Vicki has got from Suffolk Family Carers and families she has met through the organisation has been particularly important this year.

“Tragically, my mum died in January,” she says. “She had always been a great source of support to me and additional care. She fell ill last year and passed away quite suddenly. I lost her as my mum, which was hard enough, but I also felt the loss because of the extra support she had given me.

“It started to dawn on me over the spring and early summer that I needed to take stock of what was going on with Will as he was going to be moving from middle school to high school.

“I’ve been able to take part in some of the Suffolk Family Carers respite opportunities in terms of get togethers with other families and craft and tea sessions. They’ve been a great source of advice and support and are always available just on the end of a telephone.”

In common with many family carers, Vicki has found it’s easy to forget your own needs whilst making sure someone else is fully provided for.

“You focus on the cared for person and the first thing to go is often care for yourself,” she says. “You can feel a little selfish if you take time out for yourself but you have to make yourself do it if you can. Everyone needs respite for their own physical and emotional wellbeing.”

She’s also been conscious of the strains caring can place on other family members, particularly siblings.

“My daughter, who is now 18, has been a carer for her brother too. She will have that role forever and over the years it has been quite a pressure point, balancing those different needs,” she says.

“It isn’t easy but if you can put your head on your pillow at night and be satisfied that you have done everything within your power and strength for the person you care for, you are doing all right.”

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