Haven for carers of mental health service users

Winning team combines a nurse’s clinical expertise with the lived experience of a former service user to create a space where carers come for respite, reflection – and fun

‘Looking after my son feels like it takes over my life sometimes, even when I'm away from him I constantly worry about him,’ says Jean Phillips, a full-time carer for her 20-year-old son, who has Asperger syndrome.

‘I didn't get much support from people before the Carers Hub, apart from my husband. It has made a difference.’

The fortnightly Carers Hub Ms Phillips attends is a lifeline for the isolated carers of people using the primary care mental health service in Tower Hamlets, east London. The safe, supportive space allows carers to connect with others, focus on their own well-being and get practical and emotional support. 

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Watch: RCNi Nurse Awards 2018 Commitment to Carers winner Nasima Begum on the Carers Hub

   

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The East London NHS Foundation Trust team that established and runs the group – senior nurse practitioner Hannah Bjorkstrand, carer liaison worker Nasima Begum and peer support worker Naz Islam – are winners of the NHS England-sponsored Commitment to Carers RCNi Nurse Award.

Mutual advice and support

Carers are given information about relevant groups and initiatives and there are a range of well-being activities for them. Carers support and advise each other, which boosts their self-esteem, sharing their experience, tips, tools and coping strategies.

‘We became aware of how many carers were isolated, ‘hidden’ or had never accessed any support, despite caring for loved ones for years’

Hannah Bjorkstrand

Ms Bjorkstrand says: ‘The primary care mental health service cares for more than 700 service users in GP surgeries across Tower Hamlets. We predominantly see service users who have made good progress and are stepped-down from community mental health teams, although we also receive step-up referrals from GPs. 

‘We became aware of how many carers were isolated, 'hidden' or had never accessed any support, despite caring for loved ones for years. Support would have been available to them via services, but for some reason they were not accessing this. 

‘Our aim was to create a safe, supportive space to allow carers to connect with others, focus on their own well-being and get practical and emotional support. We also wanted to create a network of carers in our community, which would operate and offer support outside the group and services.’

A place of positivity

The hub was launched in April 2017 and is chaired by Ms Begum. As a carer of a family member with mental illness, she is passionate about the support it offers. 

‘It comes from my love for my family and what I wanted for them and myself when I was knocking on doors,’ she says. ‘We wanted to create somewhere carers can engage and find some positivity and happiness, somewhere removed from the hustle and bustle of appointments and clinics. And we asked carers what they wanted to get from it.’

Getting people to attend has been the biggest challenge but the team works hard to make it as accessible as possible. It is held during school hours and the team provides a buffet lunch so working carers can come in on their break.

Carers can be service users too

One third of the population in Tower Hamlets is Bangladeshi, so importantly, Ms Begum is bilingual. The team books interpreters if necessary. Ms Begum maintains contact with carers between sessions, encouraging them to attend. ‘A lot of carers are service users themselves and have their own mental health difficulties, so they are juggling,’ she says. ‘We look at both roles.

‘We encourage the carers to attend alone, so they can have respite and fully focus on themselves. But if a service user does need to come, our peer support worker Naz will run a separate group with them in a different room.’

Mr Islam’s appointment is the first time the trust has employed a former service user. He had six years' experience through voluntary work before he joined. ‘He uses his own lived experience of services in wards and the community to engage carers and service users with empathy,’ says Ms Begum. ‘This non-clinical approach helps us exceed our targets.’

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The hub has improved carers’ relationships with healthcare professionals. 

‘Trust is so important with carers,’ Ms Begum says. ‘In a crisis, the relationship between families and healthcare professionals is tested. But by being authentic and using empathy, we strengthen engagement. At the hub we can remind carers we are here to support them. 

‘Nurses get to know carers by dedicating time to find out their goals in an environment without clinical emphasis’

Nasima Begum

‘Culture plays a massive part in the relationship. Carers look up to clinicians but the hub gives them a platform where their voice is finally being heard.

‘And nurses are getting to know carers as individuals by dedicating that time every fortnight to find out carers’ goals and ambitions in an environment without the clinical emphasis – a very different setting than in a crisis situation.'

Holistic care

This relationship helps the team support the carer holistically. ‘We give carers the opportunity to have physical health checks and monitor their own blood pressure, weight etc on site,’ says Ms Bjorkstrand. ‘We have reflective conversations and plan to do a mindfulness session and offer yoga sessions. We are planning a kickboxing class.’

‘We have good links with social services to make sure our carers don’t miss out on help,’ adds Ms Begum. ‘Sometimes I make appointments for them, sometimes I go with them. I am that bridge for carers to access recovery workers and assessments. I make sure nothing is missed.

‘The hub is a lifeline to help me carry on with my caring role’

Carer

‘But importantly we have fun – and we embrace our diverse community. We celebrate Eid and the Christmas party was a banger. We had a great turnout including Muslims, Hindus and Sikhs.’

Feedback has been excellent. One carer calls the hub ‘a lifeline to help me carry on with my caring role’ while another says it stops him feeling alone. ‘It is respite and a place where I can share.’

Awareness of need

The RCNi Nurse Awards judges were impressed by its carer leadership. Jen Kenward is NHS England’s experience of care lead, community, primary and integrated care and a carer herself. She says: ‘This team demonstrated awareness of the needs of carers of service users. 

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‘They have shown genuine insight in engaging a peer mentor and have built a unique relationship between carers, support workers and registered nurses to deliver a truly supportive service that addresses carers’ needs in relation to information, education, peer support and reducing isolation.’

The judging panel was particularly struck by the equal status of team members. Ms Kenward says: ‘They were truly putting the needs of carers and the people they care for at the heart of this initiative – a fantastic practice model.’

A true collaboration

Ms Begum agrees that the lack of hierarchy is key to the hub’s success. ‘Hannah is a brilliant clinician and has really supported and supervised us as support workers. We combine our ideas and lived experience with Hannah’s expertise and knowledge. It is a true collaboration.’

The hub has been such a success that it is being implemented in the four community mental health teams in Tower Hamlets.

Jean Phillips knows how much of a difference those hubs will make to carers.

‘I function better now – I'm more confident to take up my own space when I need it’

Jean Phillips

‘Coming to the Carers' Hub has helped me integrate because before I found it hard to speak up in groups around other people, but I'm speaking out more now.

‘It gives me a feeling of togetherness and not being judged by other carers as I can talk openly and get advice from other carers too.

‘I function better now than I used to. I'm more confident to take up my own space now from my son when I need it and I think it helps my son to see what I need too.’

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 The RCNi Commitment to Carers award is sponsored by NHS England