On this cold morning in York, a dedicated crowd of professionals within the care community of York gather to examine what some of the major challenges are for carers in the UK at present. With specific focus on (but not exclusive to) younger carers, the day kicks off on a positive note with the LINk‘s Chair Lesley Pratt introducing the smiling and eager Liz Langwade who opens by talking about her experiences at York Carers Centre where she works constantly to help the needs of children in school who are known to work up to 40-hours-per-week taking care of a family member or loved one, alongside their educational commitments.
Unleashing some stunning facts about the amount of unpaid carers first, Liz reveals that there are in the UK (over five million according to the 2001 census, and that’s the people who listed themselves as “carers”), before expanding on the fact that, often these people can be as young as eight-years-old and will often not even consider to label themselves as a carer because the person they are taking care of is so close. Other useful points mentioned include that one-in-three people are carers in the UK and that there are an estimated 18,000 young carers in the UK (people caring for those with a drug or alcohol abuse problem are not counted). When considering the categories for carers and looking at the aforementioned figures, it is interesting to take into account both intimate care (helping people to wash and bathe – 18 per cent), along with 82 per cent emotional. The latter option looks at the value of simply listening and talking to the person that one is caring for – this is obviously an incredibly important aspect of care, and should never be overlooked by anyone who might consider themselves within the carers bracket.
The highlight of Liz‘s talk came as she explored why carers are hidden in the UK and why they don’t speak up about their duties, as well as dealing with this concept she talks about above including the fact that most don’t even believe that they can be labelled as carers and that the importance of that role is neither recognised by family or friends often, or that there is support available for their needs at all. This is particularly true for the younger carers with around 75 per cent of them going unrecognised by their teachers in school who don’t realise that there is most likely a valid reason for them to be slightly late – the knock-on effect of this is that the student’s record is then (regardless of circumstance) marked by low attendance in school and as such, this will make it difficult for employers to take them on, and unfortunately carers allowance doesn’t become available until the person reaches 16-years-old, and often care can start way before that.
This obviously puts these young people in a very difficult position as they do not wish to leave their immediate family or relative in difficulty and if this does occur (say for example that person goes to university), there can often be residual guilt which carries forward into later life. Similarly, it can also be difficult for those who have the opportunity to proceed into education because they might often not take the chance out of guilt or the desire to not have a younger sibling take on the potentially epic responsibility. Often, if this is the case and the young person stays to care for their loved one, they will continue on to work in care for the rest of their lives, because that is all that they know.
Taking into account her previous comments, Liz examines the question, what it is that young carers want? So that the York LINk delegates can have a better understanding of their position…
Young carers ultimately want:
- To choose their profession
- Want to do fun things with friends
- Not to feel worried or guilty
Common issues facing young carers now include:
- Getting a level of understanding from extended family and teachers alike about their duties so that they may seek support.
- Confidence and self-esteem because they spend so much time at home and caring, they have no time for social experiences and interacting with other people.
- Getting on well in school because of attendance issues and bullying (carers can be discriminated against by fellow students because of their situation).
- Relationships with the parent or person in care as a result of the role reversal that takes place – who is the parent?
On a lighter note, Liz begins to discuss what the York Carers Centre can do for carers struggling with these difficulties in the city. She explains that the aim of the organisation is to offer as much support as possible by offering information and advice in one-on-one meetings, alongside the opportunity to take trips out and relax as much as possible. “It’s been made really easy to take the cares on trips this year because we have had funding from Children In Need“, she says. “It’s really good for the kids [around 60 are currently involved with the centre] that we work with because they can have that all-important break that they need, away from the person that they are caring for.” Liz carries on, referring to some really positive experiences that have come from providing an outlet to the kids including the Young Carers Festival in Southampton which occurs yearly, and last year attracted nearly 2,000 people. She concludes: “Just that break can do so much for the young carer and make a real difference to their life.”
Following Liz’s chat, the delegates witness a special DVD designed and produced by young carers in the city of York. The film is designed to make people on the outside of the care workers’ community realise just what a struggle it is for these young people to maintain their own lives while caring for someone else’s. The narrative works on a number of levels both illustrating the passion and drive of these children to achieve their own goals and be independent, but also their desire and dedication to their own individual roles as a young carer. The strength of character shown within these children and young adults is definitely appreciated here.
For more on the film and the people who created it, you can visit: youngcarersrevolution.blogspot.com.
The second speaker today is Helen Mackenzie who is a Care Advise Worker with the Carers Centre. She works hard to help find young carers (within the 16 – 25-year-old bracket) placements if they have not had the chance to make the most of education and the opportunities available. Expanding on what Liz refered to in her talk, Helen looks at how often caring for a relative or person close to you can mean difficulty balancing that life, with life at school – this of course, can cause major difficulties in later life. Alongside that, it is a well-know point that the level of care a person might need will increase as they get older and so, the carers duties will also amplify, leaving less time for personal enjoyment and family – these factors are key to a person’s personal development.
Helen‘s job involves two aspects, the first is helping carers into work, and the second involves supporting specifically young carers who are 16-25 to find placements, jobs or to find support and help if they are going travelling or to university after having cared for someone for so long. Helen says that while she finds the job incredibly rewarding, it can be a challenge to persuade younger family members to take on the roles when a young carer needs to go off to work or university to start their own life. “It is important for me to make sure that support network is in place for the carer and for us to make sure that there are people around that can share in their experiences.” One of the great things that makes Helen such an important resource is her knowledge of employment rights and the ability to request flexibility in the workplace if you are a carer. Her skills are inspired by the fact that figures show that 80 per cent of carers out of work are of working age. Before finishing, Helen attempts to offer some balance to the presentation and recognises that despite almost every carer’s desire to live indipendently of the person that they are caring for, it can be almost impossible if you are of working age and have family to take care of and to look after your relative, and family alongside maintaining a full-time job. “It can be a difficult balance“, she says. That aside, she is keen to push the fact that the Carers Centre exists specifically to support people with those types of needs. Speaking after her talk, Helen reflects on her role and what she enjoys most about the job. “As part of the Carers Centre I have two roles – one, to help those that are older that 25 to get into work, and one to support those under that age – I try to listen to their ideas and what they want to achieve to see what kind of courses that I can direct people towards. It’s important for people to know that there is support available for them in their goals.”
With the absence of Lis Johnstone of CANDI (Children And Inclusion) who unfortunately could not attend the day’s event, but sent over her presentation. Instead, the LINk‘s own Annie Thompson stepped in to make sense of it. The subject that CANDI represents is specific to parent carers and those who are taking care of sons and daughters with specific disabilities. For most of her off-the-cuff chat, Annie relates to her own experiences with her son (who has epilepsy) and her own experiences managing the topics dealt with in the presentation including, how does the parent feel about the child? To expand, is there any resentment from either the child or the mother for example. CANDI‘s aim is to support parents who have disabled children and, to then enable those children and their family to have meaningful lives. It is interesting to see how examples are used in this presentation to showcase how people react to certain disabilities and small factors that can mean a lot to parents and their children, including staring and misunderstanding the extent of someone’s disability (do they need disabled parking for example?), it is CANDI‘s roll to offer advice, support and training to help deal with both physical care in order to offer parents the much-needed support in a variety of areas. Annie (representing the organisation for the day…obviously), emphasises that it is their mission to answer people’s questions about, ‘What do we do?’ and ‘Where do we go for help?’ which is incredibly important to build that key element of trust.
From an outside perspective the world of benefits is frightening, even when there’s a possibility of them working in your favour. York Carers‘ Welfare Benefits Advisor Jill McMahon talks about her experiences in one of the most surprising and interesting talks of the day. Looking at the various different types of benefits available for those carers who require support, including attendance allowance. Other interesting points are raised including the fact that carers allowance cannot be paid to people who receive benefits for retirement. However, it is worth noting that if a couple are caring for each other’s needs then they are entitled to a range of benefits including housing and council tax.
“When I tell people that they are entitled to these benefits, then there have been some great instances where they have used the money to do great things“, Jill says. “Some people have brought themselves beds, or paid for a taxi into town so that they can treat themselves! It’s amazing what a difference this type of support can make to someone’s life.” Indeed, it is interesting to sit from an outside perspective and realise that benefits and receiving them doesn’t have to be complicated, it’s all about finding the right support networks and York Carers Centre certainly seems able to provide that level of support. “I will always try to talk to people as much as possible and help them”, she comments. “I am very keen for the carers that I deal with to get what they want and deserve – it’s not always easy but I try to deal with whatever issues that people have, be they health or financial.”
The great thing from our perspective about the Carers Centre is their ability to build relationship and it is to their credit that they have managed to build up such a credible database of organisations that are able to support both carers and young carers alike. “We work with Age Concern, The York Carers Forum and CANDI as well, to provide as much help as possible.” Helen explains that the Carers Centre is currently looking for new volunteers to support Jill in her role. “We will offer in-house training and we’d love to get more people involved.”
If anyone is interested, you can e-mail Jill here.
In the final talk of the day, York City Council‘s Bernadette James looks at carers assessments and how important it is for the carer to take time out to do them. “It’s a chance for these people to think about themselves for once“, she says. The council representative explains that it can be difficult for long-term carers to even recognise their responsibilities at first and that the biggest challenge is to make them appreciate the amount of work that they have done. “I have to ask things like, ‘so how do you care for them?’ and ‘How does it affect you?’” usually, the replies are, ‘Oh, my blood pressure’s a bit high and it has been for a while!” With this type of example, it’s essential for us to get someone in to help them to care because the carer needs to relax.” Bernadette moves on to explain that it’s very important for cares to know that it is okay for them to feel stressed and that it’s her job to make sure that people can have access to help before the caring role becomes too stressful and it then damages relationships with both family and friends. There are a number of things that Bernadette explains are incredibly important for carers to remember when coming to her.
She can:
- Check to see if you are / are not entitled to any benefits
- Help to offer support and advice
- Direct you to your GP so that he knows that you are a carer and so, any illnesses or problems could be associated with that
It’s very refreshing to hear Bernadette‘s take on her job and she comments on how fortunate she feels to be in the position that she is. “I am so privileged, because I realise how lucky I am not to be in the position to offer some help.” She also talks about the benefits of carers filling out an assessment form from (available from York Carers Forum) because it can act like a “self-health-check” for people so that they can check if they are resting enough and also if they qualify for the emotional support that she can provide.
The LINk is once again a platform for a variety of organisations to share their ideas. Jackie Chapman of the LINK’s Steering Group and member of York Carers Forum, sums up the mood of the day by describing the role of the forum and LINk from her perspective. “We can ask the right questions because we are not responsible to the council or any PCT – now is a very positive time because a number of charities have come under the umbrella of the forum and so, we are doing well.” Another LINk representative Annie Thompson adds to the positive mood. She says: “Individuals can go to statutory services, but not everybody has that opportunity, so we want to provide a platform so that they can get their voices heard and people can say exactly what they need to.”
Thanks for reading,
Dom Smith
Don’t forget to follow us on Twitter and join us on Facebook.
Visit the official website by clicking the image below:
If you have any questions or comments about the blog, please e-mail our reporter Dom Smith
















