Carers Week: Inspiring stories of those who care

Sally Clark from Morecambe, who has MS with her son Tom Costello, who is her carer at the age of 17.
Sally Clark from Morecambe, who has MS with her son Tom Costello, who is her carer at the age of 17.
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Carers Week runs between June 12 and 18 across the UK and celebrates carers in the community.

In Lancashire, there are 133,000 people who are carers providing crucial unpaid care and support to family and friends, who could not manage without their help.

A woman holding hands with a carer.

A woman holding hands with a carer.

The support they give means that people who would often have to be dependent on professional care staff, or even in a hospice, hospital or care home; can continue to live as independently as possible in their own homes.

As part of Carers Week, reporter Michelle Blade spoke to three carers to highlight the work they do.

Case study one - Richard and Gillian Suckley

Richard and Gillian Suckley, who live on Ryelands in Lancaster, both care for Richard’s mum Ann Davis, 52, who is in poor health and requires the support of her family to continue to live an independent life.

Liz Fawcett with her sons David and Kyle.

Liz Fawcett with her sons David and Kyle.

Mr and Mrs Suckley have recently moved house, so that they can be closer to his mother, and be on hand to support her on a day-to-day basis.

They have a baby daughter called Sienna and a seven-year-old daughter Lexi-Leigh.

Like many other working carers, they find it difficult to juggle the commitments of work/family life alongside their caring role, though they do it well.

A referral was received in November 2016, and the family requested a Carers Assessment. This was carried out by n-compass Carers Services.

Richard and Gillian Suckley from Lancaster.

Richard and Gillian Suckley from Lancaster.

The Carers Assessment resulted in:

l Allocation of a carer’s Personal Budget to enable the family to have a break from their caring role.

l A referral to a local health and wellbeing organisation, so that the mother could attend some specialist gym sessions to maintain her mobility

l Information given about local groups and activities.

A woman holding hands with a carer.

A woman holding hands with a carer.

l Crisis helpline numbers given to the family.

l Reassurances that they are not alone in their caring role and advice on support that is available.

Following the assessment, Mr and Mrs Suckley received their Personal Budget from Lancashire County Council and were able to have a break from their caring role which they wouldn’t otherwise be able to do.

Mr Suckley said: “We used the personal budget to take the kids to Blackpool and had a big day out.

“We also took them on lots of mini day trips, which we wouldn’t have been able to do at that time without the budgets.

“It gave us a chance to spend some time together as a family, which was just what we needed.

Richard and Gillian Suckley from Lancaster.

Richard and Gillian Suckley from Lancaster.

“We had a great experience with n-compass.

“Everyone we spoke to was really friendly and everything was done really quickly. I would recommend them to any carer, because they make you feel reassured and that there is support out there.”

Richard, 31, a support worker for adults with learning disabilities, told the Lancaster Guardian: “It’s quite hard to be honest. When I get home from work I’m not finished work. I sort out my mum’s finances, if she gets any letters I sort them out.

“When my stepdad isn’t there we check Mum is ok. Mum has a mobility scooter and she has osteoarthritis in both knees.

“She can’t walk very far and I think she is very forgetful short term.

“She was a very proud worker and doesn’t like to rely on people.

“My daughter Lexi-Leigh sometimes wants to go and see her nana before school and sometimes my mum may take her to the park.

“She understands her nana isn’t well. and she is quite caring and grown up about it.

“We sort of work things between us (my wife and I) but sometimes I feel I’m never switched off. Work are very understanding and give me time off when I need to help with mum.”

Case study two - Liz Fawcett

Liz Fawcett has been a senior library assistant in the Special Collections and Content Team at Lancaster University for 21 years.

She has a 12-year-old son David, who has Down’s Syndrome and a rare form of epilepsy as well as another son, Kyle, who is 10 years old.

David is non-verbal, uses eye-gaze technology to communicate and needs a high level of care – every milestone he reaches is a cause for huge celebration – but Liz has been able to continue in a job she enjoys thanks to a flexible approach and supportive colleagues.

Liz said: “I work part-time during school hours to fit round my caring role. This works very well as work is a chance to talk with grown-ups and concentrate on other things other than what is going on at home and quite therapeutic for me in this way. I work with a good team of people who are very supportive and understand what I deal with on a daily basis.

“My son is non-verbal but very easy going. If in a room, he’s so quiet you might not realise he’s there. He loves listening to music, vibrating toys, lights, and food is his main motivator. He doesn’t like being tickled and will show this by pushing your hand away. Like everyone, he has his likes and dislikes.

“Everyone that meets him warms to him as he’s so easy going and laid back.

“Lots of things go through your head once you get a diagnosis of Down’s Syndrome, or something similar, but thinking about the future of what your child will do, which can seem scary, is like asking a typical newborn baby’s mum what grades their child is going to get in A-level. If anyone has concerns then I feel information is the key and any decisions should be fed by information.

“Some people may see the care David needs and think he is hard work. Far from this as he is so loving, a joy to be with and a pleasure to do things for.”

To mark Carers Week, Lancaster University has launched new guidance on supporting staff with caring responsibilities. The aim is to provide pro-active and consistent support to staff across the university and managers play a key role in this.

Tracy Walters, Assistant Director HR Strategy at Lancaster University, said: “The university recognises the increased demands on working carers and aims to provide a supportive environment and approach to their needs. “We strive to create a fair and open environment where all staff can flourish.

“By enabling better management of work-life balance, staff with caring responsibilities should feel more 
supported to combine work and managing their career with their caring commitments.”

Case study three - Tom Costello

Tom Costello from Morecambe, who’s 17, has been caring for his mum since he was 10.

She was diagnosed with multiple sclerosis (MS) when he was only two years old.

Because of the fluctuating nature of MS, Tom’s responsibilities differ from week to week.

On a good week he can wake up, go to college, come home, cook and clean and get his mum a cup of tea no problem.

On her worse weeks he’s up in the night helping her or he needs to get her to the bathroom.

His mum Sally is now unable to walk and is in a wheelchair.

Tom said: “I cook, clean and help during the night to get Mum to the toilet, clean her up, the whole spectrum.

“I learnt to make a cup of tea when I was nine or ten-years-old.

“If Mum has no-one to take her somewhere, I will take her, maybe to see grandad in Swindon.

“She also has two carers that come in during the week.”

Since last September, Tom has been doing a level 1 joinery course at Lancaster and Morecambe College so has to combine caring for his mum with going to college.

He said: “I wake up for college and see if Mum is alright. I get Mum out of bed and do cups of tea, wash and dress her.

“I get her comfy in the chair then I go to college. I’m at college from 9am until 4pm, then when I come back I’ll do the tea, make Mum something to eat and drink, then do any washing and cleaning and empty the dishwasher.

“Whenever Mum needs my help I’m there. I’ve always done it. It’s my turn to help Mum.

“My friends are very understanding and they know my mum’s disability.

“I’ve had to grow up quicker and it has been a journey.

“When I was leaving high school I thought about being a carer but Mum said: ‘Don’t even put me in front of your future’.”

Sally said: “He has been fantastic, an absolute angel.”

Tom said: “I’ve had to be so grown up. But it makes me feel like a better person, because I’ve helped my mum.”

Genevieve Edwards, Director of External Affairs at the MS Society, said: “Young carers like Tom make a world of difference in the lives of many people with MS.

“We know that 85% of people with MS rely on family and friends for help to manage this challenging and unpredictable condition. Tom’s mum’s MS fluctuates so his caring responsibilities differ from week to week.

“Being a teenage carer brings unique challenges – like balancing his role at home with school work and going out to see friends.

“That’s why we want to make sure young carers are able to get help when they need it. Anyone affected by MS who would like information or support can call our Helpline on 0808 800 8000.”

A carer is someone who provides unpaid care and support to a family member or friend who has a disability, illness, mental health problem or who needs extra help as they grow older.

For some, taking on a caring role can be sudden: someone in your family has an accident or your child is born with a disability. For others, caring creeps up unnoticed: your parents can’t manage on their own any longer or your partner’s health gradually worsens.

The amount and type of support that carers provide varies considerably. It can range from a few hours a week, such as picking up prescriptions and preparing meals, to providing care day and night.

Caring will touch each and every one of us in our lifetime, whether we become a carer or need care ourselves. Whilst caring can be a rewarding experience, it can also have a damaging impact on a person’s health, finances and relationships.

To find out how you can get support in your caring role, visit: www.carersweek.org/support.

Welfare benefits are available for carers and the people they care for. These depend on personal circumstances and people need to be assessed for each benefit:

Carers Allowance - Could be paid to the carer themselves, however, it is important to check whether any claim could affect the person they care for. A carer has to be caring for at least 35 hours a week, earning less than £116 per week.

The person they are caring for has to be in receipt of one of the following three benefits:

l Daily Living Component of Personal Independence Payment PIP

l Care Component of Disability Living Allowance DLA

l Attendance Allowance AA

For more information about these benefits, visit: www.gov.uk

These benefits may have a positive impact on other entitlements and could help a Carer (and the person they care for) to become entitled to or increase benefits such as Pension Credit, Universal Credit, Tax Credits, Employment and Support Allowance and Housing Benefit and Council Tax support.

To discuss Carers Benefits, contact the Carers Allowance Unit on 0345 608 4321.

Liz Fawcett with her sons David and Kyle.

Liz Fawcett with her sons David and Kyle.

Sally Clark from Morecambe, who has MS with her son Tom Costello, who is her carer at the age of 17.

Sally Clark from Morecambe, who has MS with her son Tom Costello, who is her carer at the age of 17.