Tag Archives: carers

Being a young carer can be stressful, but Scope’s online community helped me

Catherine is 16 years old, and a carer to her brother and sister. In this blog she explains how Scope’s online community helped her with the frustrations and stress that being a young carer can bring.

Your support can make all the difference. Please give a gift today so that a young carer like Catherine doesn’t have to struggle alone.

Not your average 16-year-old

If you met me, you’d probably think I’m like any other teenager. But I’m not.

I’m a cleaner, a cook, a carer, a homework supervisor, a role model and a shoulder to cry on. That’s a lot to take on at 16 years of age. I’m a young carer, so I look after my brother, who has Attention Deficit Hyperactive Disorder (ADHD) and autism, my sister, who has mental health issues, and my mum, who has ADHD. Phew!

I get up at 5:30am, and then it all begins, waking up the family, getting them dressed, making breakfast, giving them medication. Life is a balancing act!

Catherine and her younger sister
Catherine and her younger sister

Sometimes it all gets a bit much, so I’m glad I heard about Scope’s online community. It’s great because you don’t have to join a waiting list, or travel miles to talk to someone.

Scope’s online community is a lifeline to people like me.

It’s there 24 hours a day and there’s a whole community of people who’ve been through the same challenges and understand and can offer support.

I’ll never forget my first visit to Scope’s online community. I loved it straightaway – I saw how open everyone was about their feelings and personal battles, and I realised I wasn’t alone.

I’ve turned to the community many times since then, and it made a huge difference when my brother started hitting out at me. It was very hard to take when I was trying my best for him. But people on the community helped me see that it was his way of expressing his frustration – it wasn’t directed at me personally. And that frustration has gone away as we’ve settled into a new routine as a family.

The support I’ve received on the community has pulled me up when I’ve been down, left me in stitches when before there were tears. It’s helped me see that it’s okay to go through rough patches, and that I don’t have to feel guilty about struggling.

Looking to the future

There are so many people out there who could benefit from this 24 hour a day peer support network which is why I’m writing this blog. I want to make sure other families don’t have to struggle like I did and you could help Scope offer a lifeline to families like mine.

Catherine typing on her phone
Catherine using the online community from her mobile phone

Catherine is now helping others

I’m doing everything I can to help Scope myself. Now I also volunteer as an online community champion, to make sure people feel welcome on the site. I want to say thank you (times a million) to all supporters of Scope. Scope’s online community has been a lifeline to my family and I know it can be to others.

Catherine’s story shows that young people’s lives can be changed for the better with a friendly and accessible community, available anytime anywhere.

Donate today to support our work with young carers like Catherine.  

You could help ensure a disabled person and their carer always has someone to turn to. 

“I’m caring because the alternative was unthinkable”

Ann is one of an estimated 25,000 carers over the age of 65 who are bringing up grandchildren or other family members, because their own parents are unable to look after them. Here, she describes the impact this has had on her life.

My story began over 22 years ago when my eldest daughter was in her first year of Art College and had a psychotic episode. She never recovered and, after 22 years of being in hospitals and various hostels, she still suffers from mental ill health. This was a devastating experience for all the family.

17 years ago my daughter had a child – my granddaughter – and I became a double carer. My husband and I were still supporting our daughter and, as she was taken into hospital six days after the birth, we took on the responsibility of the new baby. My granddaughter was put on the ‘at risk register’ at birth as a consequence of my daughter’s mental health condition. She was assigned two social workers, one before the birth and another after the birth.

We were advised by the second social worker to take out a residence order to safeguard the welfare of our grandchild. We were not told it meant there would be no support whatsoever after this, as the child would then be our responsibility. The legal procedure cost us about a £1000 and a lot of emotional heartache, knowing we were taking on a role that should have been our daughter’s. We also felt a lot of pressure from the social worker as the alternative was to take our grandchild into care.

Meanwhile my husband and I were juggling caring for our granddaughter, working, caring for our younger daughter, visiting our eldest daughter in hospital daily and supporting her relationship with her own daughter with as many visits as we could. When my granddaughter was two, my husband of 33 years, left us. He said he wanted a new life which is hardly surprising given the life we had.

The last 22 years have had a huge impact on my life, physically, emotionally and financially. However despite the hardships my granddaughter has just finished secondary school and achieved 10 GSE’s plus a distinction in a BTEC music course. She plays football and was selected to be part of a centre of excellence. She has survived her difficult beginnings and is now thriving with an exciting future ahead of her.

The role of kinship carer

Kinship Care, Family and Friends Care or Connected Carers are all terms used by the social services to describe what I and many thousands of grandparent, siblings, aunts and uncles or even very close family friends are doing on a daily basis. We look after the children because we love them and know that the alternative of putting them into care is unthinkable.

It has been estimated there are about 300,000 children being cared for by other family members because the parents are unable to look after their children for a variety of reasons. The majority of those carers are, like myself, retired and living on pensions.

Once a residence order or a special guardianship order has been awarded, which are issued through the courts, we then take on the parental responsibility and more. Some grandparents are caring for four grandchildren, some have children who are disabled or who have been traumatised by their earlier experiences, and we even have great grandparents caring in their 80’s. It is estimated that around 25,000 family and friends carers are over 65 but this figure is probably greater than the estimation.

We meet the daily needs of the child, we keep them safe, we nurture them, we provide stability and love and give them a sense of still belonging to the family. We coordinate contact between parent and child where appropriate, and this can be a very difficult role especially when we are suffering the pain of knowing our own child has such overwhelming problems.

Statistically, children who are cared for within the family do much better than those in care. They may have experienced the same multiple adversities as children in care, but the benefits of remaining with their family help them overcome those traumas.

Sadly the role of kinship carers is often hidden and unrecognised. It has been estimated that kinship carers save the taxpayer £12 billion a year in care costs (if the children we look after were put into foster care). We campaign constantly for better support and recognition and some of our pleas are heard but there is still a long way to go to secure a better future for our children.

However despite all the problems and difficulties I would not change a thing. It has been a joy and a privilege to bring up my granddaughter and I would do it again a hundred times over.

We are fortunate to have Grandparents Plus on our online community this week, talking about some of the issues Ann has raised here, and answering your questions. Please join us!

A thank you to carers across the nation on Carers Week

It’s National Carers Week. This week we want to recognise the contribution carers make to families and communities throughout the UK.

The Carers Trust Pledge

Multiple charities have come through to make Carers Week happen in 2015, and we’ve added our name to The Pledge Wall. By signing the pledge, we want to create Carer Friendly Communities – meaning that we want communities to be more aware of how important unpaid carers are in their communities.

The reality of what carers do on a daily basis needs to be more well-known and local services and systems need to remove obstacles to make a carer’s life a little bit easier. Read more about Carer Friendly Communities on the Carers Week website.

Learn more about Carer’s Allowance

Carer’s Allowance is a benefit for someone who cares for a disabled person who receives other qualifying benefits for at least 35 hours per week. If you’re looking for more information about the allowance, visit our benefits pages.

Carers on our community

Our community has groups you may want to join. For example, we have a group specifically for parents and carers. We also  have groups for discussing practical issues, such as work, money, benefitsequipment, technology and education.

You can also read our  hundreds of tried and tested practical tips on everything from travel to technology in the community. These have all been contributed by people with first-hand experience of disability: disabled people themselves, parents, carers and professionals.

Keep an eye out this week on our Twitter and Facebook pages as the week goes on for more information how we’re celebrating carers.

Our family adapted to Uncle Paul’s life. It came naturally. – #100days100stories

Hannah Croft works at a Scope shop in Liverpool. She feels proud to support Scope as she remembers the support her family provided to her Uncle Paul. Read Hannah’s story in the next of our 100 days 100 stories campaign

Hannah and Uncle Paul

My name is Hannah and I work as an Assistant Store Manager in a Scope shop in Liverpool. I came across the job by chance. My Uncle Paul needed a lot of care and support following an illness and I knew that I would love my job as I would be contributing to the work of Scope which is all about supporting disabled people and their families.

My Uncle Paul was one of five children, with four sisters, including my mum Ann. At 13 Paul developed a brain tumour. The radio therapy he received affected his immune system and he contracted meningitis. This left him with neurological damage which meant he used a wheelchair and needed full-time care.

A family issue

The whole family adapted to fit around Uncle Paul’s life, it came naturally. At Christmas, birthdays and parties the family all went to my Nan’s home to be with Paul. My grandparents shift patterns worked around looking after Paul. My Aunt Margaret missed her last two years of school in order to help too. Later in life, Paul had a stroke. This left him bed bound and virtually unable to move. Margaret never left home, never got married and her job was to help care for Paul. She gave up most of her life to help her brother. After my granddad died the work for my Nan and Margaret in caring for Paul increased. They got no help.Though things were hard, Paul was pretty stable and most of my memories are good ones. My Nan and Margaret got no respite. Even though other family members offered help to give them a break, they were always thinking about him.

I remember as a small child sitting on Paul’s knee and colouring in with him. I would use his crayons and he would tell me where to colour. When I got older I learned to help and support Paul. I enjoyed this as I felt grown up and important to him. He lost the ability to speak and the only words I remember are ‘yes’ and ‘no’ and sometimes random swear words. This made us laugh. However explaining this to visitors was a different thing!

The care my family gave Paul was part of my life right from the beginning. He was treated with so much love and dignity. It has not only shaped the person I am but also every other member of my family. We are strong and stick together.

A better future

I would like to see disabled people and their families given more support. Nobody told my family how to care for Paul, they just had to learn. Nobody told us about support which could have made his life better.

Paul passed away in 2008. He was 54 years old. When he first became ill, my family were told he wouldn’t live past his teens.

Perhaps if we had known of Scope then, things could have been easier. I feel proud of my Uncle Paul and of my family and I am proud to work for an organisation that supports other disabled people and their families the way we would have liked.

Would you like to make a difference by sharing your story as part of our 100 days, 100 stories campaign? Please contact us at stories@scope.org.uk if you’d like to get involved.

Parents share their stress-busting tips

A major new study published by Scope last week revealed that many parents of disabled children are suffering from extreme stress and isolation.  As many as 80 per cent said they felt frustrated, stressed and exhausted.

Talking to other parents in the same position, can not only provide much-needed emotional support, it can be a really useful way of picking up practical advice and ideas, which is why we have created the tips feature in our new online community.

Below are a selection of stress-busting ideas we’ve picked out from the tips. We’d love to hear yours too, so please add them to the comments box below!

It’s ok to ask for help

Friends and family are often very happy to help, but don’t know unless you tell them. Draw up a list of suggestions you can use to ask friends and family for help, for example school runs, baking birthday cakes, mowing the lawn, helping siblings with homework, being on an emergency rota for overnight hospital stays.

Choose your battles

I have learned the hard way to choose my battles carefully. I have to decide which battles really are important for me to win and which I can leave. The important ones involve safety and health. Some others you have to let slip for your own sanity!

Keep your sense of humour

My husband and I play a game where we place bets with each other which of our three disabled children will wake/ kick off etc. at what times. The ‘winner’ gets a treat from the other partner. Sounds silly, but making light of intensely stressful situations really does help us cope.

Do a happiness audit

Think about what gives you happy feelings and do it as often as possible – whether it’s singing, dancing, laughing, sex or chocolate. Create a ‘Prescription for change’ for yourself, listing the things you need twice a day and twice a week. Then stick it on your fridge.

A positive note

When you have a disabled child, filling in forms can be very depressing as you focus entirely on the negative. So I write on a separate sheet of paper one good point for every negative. I laminate this and put on the fridge so that when things are tough I can read it and remind myself of the fab things about my three disabled children.

Get all the help you can

I would suggest parents try every bit of help on offer – Portage, Child Development Centres,  local libraries, health visitor, support groups, etc. It’s much easier to opt out than to try and opt in later, when your child is older. Referral for specialist services (e.g. portage) can take ages and is worth getting sorted out as early as possible.

Be honest about your limits

Therapists mean well when they give you lots of exercises to do with your child, but sometimes, it’s impossible to keep up with them and still have time to do stuff like eat, sleep and breathe. Be open with the therapists if you feel overwhelmed, or need more ideas for exercises that can be an organic part of your day (say, bicycling a tot’s legs as you change her nappy).

Share the load

Let your partner help when they can. Yes, they may do things differently, but that isn’t necessarily a bad thing.

Face to face

Talking to other parents who are going through the same thing as you is always helpful. Face 2 Face is a one to one parent befriending service, run by Scope, for parents and family of disabled children.

Get plenty of exercise

Exercise is great for your overall mood. I’ve taken up weights, because my son is large and I worry that one day I won’t be able to manage him. Being fit has given me huge confidence in how I manage my son, which in turn has improved his behaviour.

Schedule time for yourself

Try to make a little quality time for yourself each day even if this means leaving the person you care for in front of their favourite DVD or TV program for half an hour. It won’t do them any harm! If you can, try and take half a day a week off – book a babysitter, book your child into a crèche/playscheme, play date, or family – give yourself that time to re-charge.

Organise your home life

Buy two of non-perishable items like washing up liquid, so you always have one in reserve. Have a whiteboard in the kitchen to write on when things run out. Plan your meals for the week – even think about having Tuesday as curry night, Wednesday pasta, Friday fish, etc. to save time thinking. If you can afford to, get a cleaner.

Get a good night’s sleep

Sleep is very important. If you are tired, you will feel even more stressed. Try taking it in turns to get up at night so one person always has a full night’s sleep.

Yoga for you

Take up Yoga to stop muscle injuries especially if you have to do lots of lifting and carrying.

Friends and hobbies

Friends and hobbies are enormously important because they take you out of your role as a carer for a short while. I try and mix with people who aren’t carers too, so I get to focus on something else for a bit.

Time out

I started running after the birth of my disabled daughter eight years ago. It’s my time out – time for me to de-stress, clear my head & take out my frustration on the streets. I come back a happier and calmer person, ready to deal with the real world again. I think we all need time out for ourselves.

Have you got a stress-busting tip to share? If so, let us know in the comments below.

Explore our other tips.

Why we need more male support workers

Guest blog from Luke Masterson, a support worker at Scope in Leeds.

Luke Masterson, Support Worker at Scope in Leeds
Luke Masterson, Support Worker at Scope in Leeds

As a male support worker in my early twenties, I was interested in a recent article in the Guardian about the shortfall in male social and support workers. The article says “only 4.2 per cent of working men currently have roles in health and social care (compared to nearly one in six women)”. Also, only “23 per cent of 16-25 year-olds said they would be more inclined to think about a career in care, if there were a more positive public perception of the role”.

So what is the public’s perception of male carers? Regardless of whether the carer is male or female, are they not doing a fundamentally important job in providing the community with a better standard of living? The gender of a social or support worker is irrelevant.

The main goal of my job at Scope is to provide service users with a better quality of living and increased independence. I have to be honest about how I ended up here. I initially went to a volunteering fair when I was at university to look for something that could enhance my CV and learn more about how a charity works. A year later I work at Scope full time, 41 hours a week, with four different service users and I am in love with the job. Being able to contribute to the community, build relationships with service users and help provide a better quality of living is an un-realised dream come true; not something that I even considered during my journalism degree.

All of the service users I work with are men. One of the main reasons for this is that many male service users need a male companion or role model in their life. This then highlights the issue of the lack of male care support workers, why is this the case? Working in this sector you find yourself predominately giving emotional support, is this something women are more equipped at? In my job I’ve had to learn how to give emotional support, as it’s something I’d not had much practice at before working for Scope.

I do believe the main reason for the current decline in the amount of care workers, regardless of their gender, is the decreasing amount of funding in the care sector. Until this is resolved, the decline in young male support workers seems likely to continue. I think the idea of care and social work also needs to be introduced to males at an earlier age. The work is extremely rewarding and fulfilling and I definitely recommend it to other men my age. Breaking down the stereotypical views of the profession could help to increase the number of males in this sector, which would undoubtedly improve services for the people who need them.

Scope in Leeds offers support to disabled people and their families at home and in the local community. Search our current job vacancies.