The Young Carer Identification Card: Uncovering a Hidden Population
Whittington Health is an integrated care organisation providing general hospital and community care across North London. More than 4,000 staff work for the organisation to provide care to over 500,000 patients.
Young carers are under 18s assisting in the care of a relative/friend who is ill, disabled or misuses drugs/alcohol. Despite their integral role within society, they remain a largely ‘hidden’ population and initiatives specific to their identification within healthcare are absent. Voices of young carers, healthcare professionals and voluntary organisations were acknowledged to improve young carer recognition. The co-creation of the young carer identification card was led by Colette Datt and Naheeda Rahman from Whittington Health in collaboration with Family Action, Healthy London Partnership and Together Creative. Multiple multidisciplinary team meetings, young carer workshops and presentations were executed to develop and disseminate this project.
By identifying themselves as young carers, users can open up much-needed channels of communication with professionals. This can lead to greater opportunities for young carers to positively contribute towards patient care and receive support. Supporting young carers, mentally and physically, will prevent future burden to the NHS; aligning with the five-year forward view. The identification card is being piloted by young carers across North London. Regular feedback will influence future prototypes and dissemination plans. Young carer identification is a universal issue–identification cards can be adapted and used across London to improve their access to healthcare.
This is a quality improvement project initiated by Colette Datt, Nurse Consultant of Children and Young Person services at The Whittington Hospital, in response to engagement with young carers from two local boroughs. Young carers expressed concerns during a workshop held at Whittington Health in October 2017 about their experiences engaging with healthcare. Young carers highlighted their difficulty in accessing services, and communicating with healthcare professionals; they were often not heard, engaged with nor respected by healthcare professionals because they did not know their rights as young people, and certainly not as young carers.
The primary outcome of this project is a cost-effective young carers card that empowers young carers to assert their rights within healthcare and increases their recognition among healthcare professionals. It was anticipated that an increased knowledge of their rights as young people and young carers within the NHS, supported by young carer identification cards, would encourage and empower young carers to confidently assert their rights to access support entitled to them.
This project was registered as a quality improvement project at The Whittington Hospital and was led by Colette Datt with considerable input from Naheeda Rahman, a UCL medical student as part of her iBSc in Paediatrics and Child Health. Voluntary organisations, Family Action Islington and Camden and Tottenham Early Help and Prevention Service, provided this project with indispensable insight into young carers’ needs; Healthy London Partnership funded and advised the development of identification cards; and Together Creative brought the young carers’ designs to life.
This initiative was only able to reach such levels of success within twelve months due to the communication and commitment offered by the team. A young carers rights workshop was held by Whittington Health in collaboration with Family Action in January 2018. This was in response to young carers who expressed a lack of knowledge of their rights as young people and young carers during the October 2017 engagement session. Naheeda carried out quantitative research during this workshop to elicit whether education on their rights within the NHS would increase their confidence to assert them. Naheeda then conducted semi-structured interviews to determine the awareness of young carers’ rights and support within healthcare amongst young carers and healthcare professionals. Themes extracted from the interviews informed the design and dissemination of this initiative. In total, eight engagement events with twenty-one multi-ethnic young carers aged 11-19 were led in 2018 across North London via Family Action Islington and Camden and Tottenham Early Help and Prevention Service.
Young carer identification was discussed during the rights workshop and a unanimous decision was made to co-develop a young carers identification card. A small amount of funding was secured via Healthy London Partnership allowing the project to invite design company Together Creative to co-develop the identification cards with the young carers. Phase one of this pilot began in June 2018; engagement sessions provided young carers with opportunities to feedback on the usability and effectiveness of the cards. The final feedback session for phase one is in January 2019.
As a result of the rights workshop, young carers in Islington and Camden reported a 48% and 56% increase in their perceived knowledge and confidence to assert their rights in healthcare. These factors were assessed before and after the workshop via self-assigned 5-point Likert scores. Semistructured interviews were conducted with ten paediatric healthcare professionals, eight adult healthcare professionals and two young carers. Responses were thematically analysed and a lack of awareness and recognition of the young carer phenomenon by healthcare professionals was found to be the inevitable foundation of their poor healthcare experiences.
The young carer identification cards are being piloted via Family Action Islington and Camden and Tottenham Early Help and Prevention Service. Young carers provide feedback every three-months through workshops and questionnaires to establish where, how and why they used the cards and how they have been received by professionals. For example, a young carer in Islington used the card to access information about her mother’s condition from a healthcare professional. Young carers also believe that the card will help them to collect prescriptions they have previously been denied.
Conversely, feedback from both young carer cohorts identified the following barriers: loss of card, misunderstanding of the card’s purpose and limited interactions with healthcare professionals. Young carers have also expressed their desire for the card design to be similar to that of a more widely recognised identification card (i.e. a student identification card) as opposed to the current cardboard material. This initiative plans to re-design and print the cards onto recyclable plastic for phase two of the pilot.
Relevance to Others
The literature has demonstrated that young carer identification is a universal issue and therefore the associated problems will be equally applicable to other groups. While the young carer identification card has been co-created and piloted with young carers in North London, the concept and card can be adapted and used elsewhere. Once fully developed, the final young carer identification card can be implemented across all UK Trusts and services interacting with young carers.
Young carers are eager to use the identification cards across social, educational and recreational services as well as to access young carer discounts (i.e. cinema tickets, supermarkets). This initiative has been presented at external several conferences including: NHS England supporting carers in secondary care, Great Ormond Street Bioethics and Law Masterclass (1st prize) and the young carer quality improvement project has been accepted as an oral presentation for the Royal College of Paediatrics and Child Health conference in 2019. Professionals agree that young carers are a hidden population and that an identification card would not only raise awareness of the individual young carer, but prompt them to consider who else may be a young carer.
This initiative worked in collaboration with young carers – a notoriously difficult population to engage with. Young carers communicated difficulties they face when interacting with healthcare services and their desire for change. Whittington Health partnered with Family Action, Tottenham Early Help and Prevention Services and Healthy London Partnership to use this information to educate young carers and provide them with rare opportunities to advocate for themselves within healthcare.
Working with voluntary organisations through several mixed multidisciplinary team meetings has allowed for enhanced communication between sectors and thus greater understanding of the barriers young carers face in healthcare. Moreover, this project has used the perspectives of young carers and healthcare professionals to create a cost-effective solution. Healthcare professionals acknowledged that they heavily relied on visual cues of caring to signpost them to consider the patient’s wider caring network. It is anticipated that an identification card will encourage healthcare professionals to include young carers in conversations and that improving young carer experiences within healthcare will positively enhance their relationship with the NHS, as well as improve overall patient experience.
This could reduce the rates of mental and physical illness among young carers and therefore save the NHS money in the long-term. Above all, this initiative is exemplar of the work that can be achieved through partnering with several organisations, in addition to NHS users themselves. Young carers have consistently engaged with services to co-create a tool they believe can help them to access support. While there are challenges in partnering with multiple organisations, the commitment and passion shown by all parties is a true testament to this initiative’s potential.
Key Learning Points
- Listening and understanding the views, opinions and feelings of young carers and using their experience to co-develop a resource has proven to be essential in the implementation of an initiative that excites them.
- Working with groups outside of the healthcare sector gave this project access to different knowledge bases and bridged the gap of miscommunication between service users and providers.
- While engagement with multiple organisation strengthened the project, it also made it difficult to schedule workshops. The project timeline was longer than anticipated to accommodate and maximise young carer engagement.
- Engagement with young people is notoriously difficult, but even more so with young carers who have additional responsibilities. This was demonstrated by the varying numbers of participants at each workshop. Similarly, it has been difficult to collect feedback from all young carers participating in the pilot due to their limited availability.
- Finally, it has been difficult to provide young carers with a card that they are satisfied with due to the lack of funding. Thus far, a fraction of the £13,000 required to create and disseminate the ideal young carers card has been accessed.