2021 supporting Heart Heroes

About Heart Heroes

Heart Heroes was established and registered in 2018, supported by enthusiastic community fundraising which has rapidly expanded. We are currently helping 262 families in Gloucestershire who have children affected by heart conditions, with a further 935 families identified – during the COVID-19 crisis – that would like and benefit from our support in the South West. There are an estimated 6,500 children with congenital heart disease in the South West alone – not including those who have developed heart conditions as a result of viral/bacterial infection or trauma. 

Until recently we have provided:

  • Shared support networks for parents, developing practical understanding of conditions, how to manage care and improving mental health and wellbeing.  As one parent commented “Friends at Heart Heroes just get it. Their events take the pressure off explaining to people.” 
  • Support to disadvantaged families by providing specialist equipment or days out for families that are unable to afford it.
  • Activity events suitable for affected children and their siblings to take part in as equals and feel normal – ‘heart’ children often struggle with shortness of breath, low stamina and poor immunity. 
  • The beginning of a Patient Journey folder developed in collaboration with patients, parents and staff at Bristol Children’s Hospital. This will ease the burden of copious amounts of paperwork to file and relieve any stress and anxiety children may have during lengthy appointments and admissions by providing activities, visual tours and cartoon-like paediatricians to explain procedures in a fun and engaging way. 

During the COVID-19 crisis, we have been unable to offer this support in its face-to-face form. Therefore, we have dynamically changed our approach to meet the needs that still exist and the increased demands due to coronavirus, so that no vulnerable family in our community feels alone. Our volunteers have been making additional phone calls to assess carefully what our children and families most need so that we can continue to support emotional wellbeing and take some of the added pressure away from the NHS cardiac team at Bristol Children’s Hospital. Bristol Children’s Hospital are closely involved in the support we offer, particularly in hospital provision as there is increased demand for medical staff from concerned parents and children. 

Need

Heart Hero families have faced an increased demand and challenges to keep our critically and extremely vulnerable children (immune suppressed) safe during the COVID-19 crisis. Great Ormond Street Hospital (GOSH) have announced that extremely vulnerable children (group A) should remain shielded, following government advice, due to the risk of severe infection or the complications it could cause. Many of the children we support are undergoing or have undergone life-threatening open-heart surgery and therefore immunosuppressed; they are considered extremely high risk of more severe complications of COVID-19, which could prove fatal. The majority of children we support are automatically listed under group B which is a case-by-case discussion depending on severity – this has generally caused more anxiety, as parents and children have become socially vulnerable and need additional support from the Heart Hero community. The Chief Executive of mental health charity YoungMinds revealed that over half of parents have said that the mental wellbeing of their children has been one of their biggest concerns during isolation and parents are unsure how to support them. 

Heart Heroes have provided a variety of services to support children’s emotional well-being during lockdown. Our online support forum proved invaluable and we were inundated with requests for support from sending care packages, activity packs, IT equipment, to just being there to answer any questions from concerned parents, using guidance from Bristol Children’s Hospital. 

As a charity, we realise that we are needed now, more than ever and there is a real concern around the impact COVID-19 is having on maintaining positive mental health for families that have or are going through a difficult time, trying to shield their critically vulnerable children who are already living with a potentially fatal condition. We are already working in collaboration with Bristol Children’s Hospital by providing an alternative source of considered information on hospital appointments, procedures and conditions through peer-to-peer support. However, the Lead Nurse, Sheena Vernon from the Congenital Heart Disease Network has expressed her concerns on the need for more support around mental health and wellbeing for families dealing with congenital heart disease (CHD).

We have listened carefully to our Heart Hero community to determine how we can best support our family’s mental health, wellbeing and the physical health and safety of our critically vulnerable children during the COVID-19 crisis and beyond. We have discovered that:

  • Poor mental health of both parents and children has been exacerbated by new stress factors related to the COVID-19 crisis
  • Anxiety is heightened by concerns around hygiene at school and the workplace
  • Parents are struggling to successfully shield their critically vulnerable children pre- and post-surgery 
  • There are fears around the lack of knowledge about the effects of coronavirus on CHD
  • There is a lack of support and limited opportunities for isolated families to connect 
  • Children are withdrawn and isolation has exacerbated the sense of disconnection from friends and society from lack of social interaction
  • It is difficult to access relevant services for support as health services are stretched to their full capacity. 

New data issued from Public Health England after conducting a survey discovered that the coronavirus pandemic has had a huge impact on the lives of children and young people across the country and many have struggled with social isolation, anxiety and fears about what the future holds. The research found that:

  • 41% of children and young people said they were lonelier than before lockdown
  • 38% said they are more worried 
  • 37% said they are sadder
  • 34% said they are more stressed

These results are alarming and it is a particular concern for families that have critically vulnerable children with CHD within their household. The survey was conducted on healthy young people, and these numbers are likely far higher for children with CHD. NHS services are already overstretched with a long waiting list for help and limited budget will mean priorities will be given to those most in need, leaving many families without support. Families need more advice on what action to take to support children’s mental wellbeing before anxiety levels become even more difficult to address. 

Objectives

Heart Heroes want to ensure that every voice is heard within our community, and expand our offering to meet the increased need for mental health service provision in the South West. We need to ensure that we support the mental health and well-being of families severely affected by CHD, particularly addressing the added concerns coronavirus is causing now and in the future as early identification and treatment for anxiety prevents long term mental health issues. Unfortunately, self-funded counselling sessions are not an option for most families, and there are limited social support groups operating due to current government guidelines, meaning that families in distress have nowhere to turn. We need to address this now, as the level of uncertainty is rising. We need to: 

  • Support the mental health of parents and children through regular or as-needed counselling sessions
  • Decrease anxiety by providing clear and trusted information about hygiene
  • Be a one-stop shop for the most up-to-date knowledge about the impact of coronavirus and CHD
  • Provide safe spaces for children CHD and their families to connect and play
  • Alleviate unnecessary burden on the NHS by working closely with Bristol Children’s Hospital to signpost families in need of information or support

In order to do this, Heart Heroes will;

  • Provide virtual therapists/counsellors to families most in need within the South West
  • Develop a more advanced online support forum which will enable: 
    • access to an online chatroom for our parent community
    • questions and answers around how best to support critically vulnerable children during the COVID-19 crisis
    • online videos on practical care for children with CHD, produced by the Cardiac Ward Sister at Bristol Children’s Hospital
    • awareness of available support and possibilities that may help to alleviate families’ mental distress
  • Set up virtual social groups for both children and parents to support mindfulness and emotional wellbeing, particularly during isolation. These virtual group sessions will include:
    • art activities for children
    • music groups for babies and toddlers
    • coffee mornings for parents to share any concerns 

To ensure optimum support, Heart Heroes need to source additional funding to enable us to:

  • Extend our community consultation and engagement by offering support to Children with CHD in the South West.
  • Purchase a safe, online booking system to enable our Heart Hero team to allocate families a counsellor to set up virtual group therapy sessions for children in need
  • Purchase sufficient IT equipment within each hub to enable virtual support
  • Purchase 20 iPads to loan out to families most in need
  • Employ a Communications Assistant to liaise with families and relevant support networks.

Impact on Beneficiaries 

During lockdown we have worked hard to reduce the feelings of isolation, stress and anxiety by being a friendly face and voice each day. We have closely monitored the wellbeing of our Heart children, ensuring they have what they need and being a voice of fact and reason when worries overtake rational thought. We will continue to work with Bristol Children’s Hospital to promote the service widely and strategically to remotely reach as many families who need us within our community as possible. Children need to keep their minds focussed and feel some sense of normality during treatment, and even more so with the added concerns around coronavirus. Expanding support to our Heart Hero community over the next 12 months will:

  • Reduce cost on an overstretched NHS system that will inevitably experience even greater demand post COVID-19 (acute mental health care is £1,000/day if individuals are in crisis)
  • Reach out and support an additional 500 families in Bristol and Cardiff by March 2021 
  • Over virtual counselling sessions to all 500 Families with CHD before they reach crisis and enter acute mental health care including social groups, supporting emotional wellbeing.
  • Offer approximately 500 families support via our online support forum