Every single day an extra 6,000 people take on the responsibility of being a carer. Back in December 2016, a completely new type of online support was set up on the social network HealthUnlocked.
This regular, ongoing support of another person can change people’s lives. In fact for many, life will never be the same again.
It’s not all a struggle though, and many people report finding it a rewarding and positive experience. One of the biggest factors in how people experience being a carer is dependent on the support they are getting, knowing where to turn, understanding when to get extra help and when to ask for or turn to professional support.
The platform, which connects people to share experiences, already had hundreds of online support communities and forums for people with chronic and long term health conditions. But this was different; it aimed to address and provide a safe space for carers to come together and ask the difficult questions and importantly, the ones they didn’t know who else to ask.
The brainchild of Simplyhealth, as part of their commitment to support informal and unpaid carers, the Care Community has quickly grown to over 3000 followers. The forum discusses the complexities and realities of being a carer from the perspective of the person carrying out the caring. One of the most impressive things that you see instantly on the forum is that everyone on it understands the realities and everyday issues that people are facing, whether it is managing another person’s finances, or choosing a care home.
Research on the forum showed the common concerns, problems and needs people caring for others were experiencing. 81% of those surveyed said they had problems accessing the help they need; 87% said they felt anxious about their caring responsibilities and lives; and 84% of respondents said they need more support from family or friends.
All of the discussions on the forum bring home the realities of caring for a loved one. None more so than the discussions around when and how to bring in extra support from paid carers or how to choose a care home.
“Does anyone have any advice/tips on how to introduce carers to help in the home? My family care for my nan (who has recently been diagnosed with Alzheimer's) and grandad (currently in hospital after a fall) but my nan doesn't think she needs any help. If anyone has been through a similar situation and has had success on getting through to someone with dementia, I'd really appreciate hearing your advice please.”
“My dad now lives off tinned soup and in increasing squalor. My sister is 60 miles away, I'm 120 and my brother 80 miles away. He is happy for us to help but has declared he will get rid of the carers arranged by the hospital within 2-3 weeks. He won't even accept new slippers. He insists on driving despite my warning in the presence of his doctors that he's not in control of his car. I refuse to go in the car with him. Other people must face similar problems. How do you cope?”
There is nothing unusual about either of these statements, and it’s very relatable. The responses given to these posts are incredibly moving, with many people showing that they truly understand the concerns and stresses expressed, having also been on the same journey and made similar difficult decisions.
“I looked after my Mum who lived with us until it became physically impossible for me, and it was such a difficult decision to find a care home who would look after her like I did, and like your Mum she didn't want it at all, but she was taken to hospital after falling and then a social worker got involved and we all finally persuaded her that she couldn't go back to live on her own it wasn't safe for her.”
Commenting on the forum, Carolyn Barkin from Simplyhealth said: “We knew from our research that carers wanted not only support but also the opportunity to connect with people in the same situation. Reading the powerful conversations taking place between our 3,000+ community members, you can see that the Simplyhealth Care Community is fulfilling that need. It’s not just about advice; it’s about talking to people who truly understand what you’re going through.”
Being a family with someone who has care needs, no matter how complex, is life changing. Whether it starts with managing the additional responsibility yourself, or making the right decision over paid carer support or care homes, it has never been more important to make sure people have the right resources and help to enable them to make proper and informed decisions. The emotional aspect of caring for someone you love together with the complexity of the system means we expect forums like the Simplyhealth Care Community to become even more important over coming years.