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Under the radar: why young carers are missing out on the support they need

A nurse-led initiative is challenging the lack of recognition often felt by child carers

A nurse-led initiative is challenging the lack of recognition often felt by child carers

  • Nurse consultant was galvanised to act after hearing about the plight of an 11-year-old girl who was her mother’s carer
  • Project team was set up to find out from young carers how the healthcare system failed to recognise their needs and rights
  • Carer ID cards, trust champions and an app are among measures the team believes could be adopted across the healthcare system

Two young carers consider some discussion points

One evening, nurses at Whittington Health NHS Trust in London noticed an 11-year-old girl sitting with a patient – her mother – on an adult ward late at night. ‘She had been there all day and nobody had noticed,’ says Colette Datt. ‘She had no idea how to get home.’

After hearing about the case from the safeguarding team, the trust’s nurse consultant for children and young people investigated what carer policies Whittington Health had, and discovered there wasn’t one for carers, whether child or adult.

Push to encourage carer recognition 

With band 6 nurse Sandra Frimpong, medical student Naheeda Rahman and a group of young carers, Ms Datt began a project to empower young carers by teaching them their rights and co-creating an identity card encouraging healthcare professionals to recognise the caring role. 


From left, patient pathway coordinator Madeline Ioannou, nurse consultant Colette Datt, nurse Sandra Frimpong and medical student Naheeda Rahman

‘Young carers are looking after a relative or friend who is ill, disabled or misuses drugs or alcohol. Despite their integral role in society, they remain a largely hidden population and initiatives specific to them in healthcare are absent,’ observes Ms Datt, who was undertaking a Florence Nightingale Foundation scholarship. 

‘We had an “outstanding” care rating but you wouldn’t think so if you had heard what these young people had experienced’

Colette Datt, nurse consultant for children and young people, Whittington Health NHS Trust

‘We wanted to hear from the young people themselves but young carers are traditionally difficult to engage – the whole problem is that they are so under the radar.’

The consultation process

She contacted Tottenham Early Health and Prevention Centre, which had a drop-in centre, and Islington and Camden Family Action, which had a young carers’ group. Because the latter was commissioned to provide services for young carers, it was able to bring 15 young carers to Whittington for an engagement session.

‘We wanted to find out what they would find helpful but their stories were very difficult to hear,’ recalls Ms Datt. ‘I was shocked – we had an “outstanding” rating for caring but you wouldn’t think so if you heard what these young people had experienced.'


Young carers share their experiences in a workshop

‘It was very upsetting,’ adds Ms Frimpong. ‘The vast majority had experience of not being listened to.

‘These accounts included healthcare professionals not including them in the cared-for person's care. They were not being taught when and what medication to give. They were seen as children with no rights, rather than carers, and were not informed when appointments were cancelled even when they were missing school to attend.’

Focus on the children’s rights

The team offered the young carers a session designed to help them assert their rights to the support to which they were entitled.

They also registered their work as a quality improvement project to identify barriers to young carers in the trust and to create, with young carers, a policy to address their needs.

‘Supporting young carers is our duty’

Nurse Sandra Frimpong was keen to take part in the project because she already knew about some of the issues young carers faced.

One of her nursing colleagues had been a young carer and had shared her experiences, and she had met young carers on the ward in her children’s nursing role.

‘All healthcare professionals need to be aware of young carers. I also wanted to write a policy as I had never done it before,’ she says.

Forgotten group

She investigated what carers’ policies other trusts had. ‘The three policies I found covered adult carers. While we initially wrote ours as a young carer policy, it made more sense to cover carers and young carers in one policy.’ 

The policy was ratified in October 2018 and staff will shortly be able to access it through the staff intranet.

‘We are now focusing on robust implementation across the trust,’ says Ms Frimpong. ‘I held an engagement stall during carers’ week to raise awareness of young carers and introduce the policy to staff. They seemed extremely interested and keen for it to be used.’

‘A caring role can adversely affect young people’s physical and mental health, educational outcomes and quality of life’

A total of 42 staff completed a survey, giving their ideas on how to implement the carers’ policy.  

Ms Frimpong plans to interview ten staff. ‘We will launch the policy based on qualitative feedback from staff that focuses on their ideas for implementation combined with my literature review on how to implement a policy for young carers.’

The policy has been the focus of Ms Frimpong’s master’s degree.

Being a carer comes at a cost

‘Research shows there are as many as 800,000 young carers in England and they save the NHS £132 billion yearly,’ she says. ‘While there are positive effects of caring, such as resilience, young carers often don’t have a choice to care. They need to be recognised and identified at an early stage because their caring role can adversely affect their physical and mental health, educational outcomes and quality of life. 

‘In health we are ideally situated to advocate for and support young carers. Our policy and ID cards aim to enable them to be identified, recognised and supported in our trust. It is our duty.’

 

Boost to individuals’ confidence

There was a rights workshop, which used the UN Convention on the Rights of the Child to frame discussions about the rights young carers felt were most important to them.


Colette Datt Picture: David Gee

‘This time we went to them, rather than bringing them into the hospital,’ recalls Ms Datt. ‘It was much better in their own environment as they were much more open and relaxed.’

After the rights workshops, the young carers reported a 48% increase in their perceived knowledge, and a 56% increase in confidence to assert their rights in healthcare.

Naheeda Rahman conducted semi-structured interviews with ten paediatric healthcare professionals, eight adult healthcare professionals and two young carers. The interviews threw up the following themes:

  • Lack of awareness.
  • Poor identification leading to insufficient support.
  • Young carers' voices.
  • Family dynamics.
  • The impact of caring.

Staff members’ lack of awareness or recognition of young carers were found to be the foundation of poor healthcare experiences, says Ms Datt. ‘The young carers wanted an identity card to address this. They wanted an NHS logo on it – something official so they would be believed. And they wanted their rights on the back.’


Messages written in carers’ own words

The Healthy London Partnership (a collaboration between the NHS and local government in London) funded the prototype card with £1,120, and a design agency, Together Creative, helped the team and carers co-design the identification cards.

Workshops were invaluable

The six workshops held by the team were crucial, giving them the opportunity to hear the difficulties experienced by the young carers and develop the policy in a collaborative way that was useful for them.

‘We enabled them to co-design everything on the card, which helped us to understand what was most important to the young carers,’ says Ms Datt. ‘The words “we matter too” is a direct quote from one of them.’

Feedback

The team collected feedback from 12 of the 21 young carers piloting the card every three months. This was used to create a carers’ policy for Whittington Health as well as in the prototype of a second card.

‘These seemingly small steps alleviate stresses and help alter young carers’ perception of the healthcare system to one that is more supportive and welcoming’

Colette Datt, nurse consultant for children and young people, Whittington Health NHS Trust

Feedback from the young carers shows the difference the card has made to their experience of services. Several have presented the card when picking up prescriptions for their parents – previously they had not been allowed to do so. One young person used the card to get a free flu jab. Another reported an increased level of respect: ‘I showed the card to a consultant and he let me sit in my mum’s appointment and explained things to me’.

‘While these may seem like small steps, they alleviate certain stresses faced by young carers and help to alter their perception of the healthcare system to one that is more accessible, supportive and welcoming of them,’ says Ms Datt.

In their own words: views of carers and hospital staff

‘We’ll never be acknowledged or appreciated because it’s like the only person who really appreciates that is the person you’re caring for.’
– Young carer

‘The card… helps because it makes young carers feel like they are actually worth something. That they’re not just someone who’s being ignored.’
– Young carer

'Some parents probably don’t perceive… their children as being carers. They just think they’re being their children.’
– Healthcare professional

‘Sometimes when we first meet them we don’t know they are young carers. It takes us weeks and months to establish a relationship.’
– Healthcare professional

 

Carer-focused improvements

The team soon realised the project had room for improvement.

‘We realised young carers didn’t know where and when to use the card so we created an A4 information sheet to promote its use,’ says Ms Datt.

‘We also realised the main barrier to young carers using the card in healthcare was its design – they said the card was bulky and didn’t look professional enough.’

The second prototype is small and plastic and bears the carer's name. Around 50 young people will pilot it, thanks to a grant from NHS England.

In 2018, the team won a prize for partnership working to improve patient experience at the Patient Experience Network National Awards. And this year, it was among finalists in the Commitment to Carers category of the RCNi Nurse Awards, sponsored by NHS England.

Partnership working throws up challenges

The partnerships required have proved a challenge as well as a strength. ‘Without them I’m not sure how else you would reach this group in the first place points out Ms Datt. ‘They are hidden because they are restricted by their caring responsibilities in what they do.


A boy takes part in a workshop
exercise

‘But engaging through multiple workshops made it more difficult to schedule workshops and to agree priorities. Each organisation had its own objectives to meet their commissioning commitments, which took priority over the project. We worked together to find dates that worked for all of us but it took longer than we anticipated.’

Looking to the future

There are exciting developments ahead. A young carers policy will be ratified across Whittington Health, including electing young carer champions in the trust’s health teams.

An app and website making it easier for young carers to access information about their rights and the services available to them are planned for 2020.

But most of all, the team wants to see other heathcare organisations change their approach to young carers.

Ms Datt adds: ‘This makes a difference and we have some data to prove it.’


Elaine Cole is RCNi special projects editor


The Commitment to Carers Award is sponsored by NHS England

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