Analysis

Parents of seriously ill children need dedicated mental health support

Rainbow Trust report finds parents of seriously ill children experience ‘shock, fear, anxiety and helplessness’

Rainbow Trust report finds parents of seriously ill children experience shock, fear, anxiety and helplessness

  • Rainbow Trust says it is impossible to know the scale of unmet need
  • Fear of judgement or stigma can act as barriers to parents accessing support
  • Rainbow Trust wants more investment in training and specialist psychological support

Horrendous, traumatic and the hardest days of my life these are just some of the phrases used by parents to describe the mental and emotional toll of having a child with a life-threatening or terminal illness.

Without help, the anxiety, stress and depression can become overwhelming and have long-lasting consequences. Some parents report developing post-traumatic stress disorder even after their children have recovered.

Even with help, mental health can suffer. But the struggle many parents face trying to get help or going

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Rainbow Trust report finds parents of seriously ill children experience ‘shock, fear, anxiety and helplessness’

  • Rainbow Trust says it is impossible to know the scale of unmet need
  • Fear of judgement or stigma can act as barriers to parents accessing support
  • Rainbow Trust wants more investment in training and specialist psychological support

Picture: iStock

‘Horrendous’, ‘traumatic’ and ‘the hardest days of my life’ – these are just some of the phrases used by parents to describe the mental and emotional toll of having a child with a life-threatening or terminal illness.

Without help, the anxiety, stress and depression can become overwhelming and have long-lasting consequences. Some parents report developing post-traumatic stress disorder even after their children have recovered.

Even with help, mental health can suffer. But the struggle many parents face trying to get help or going it alone adds to the burden, according to a report by the Rainbow Trust, a charity that provides support to families with seriously-ill children.

The findings are based on an analysis of research in this area and in-depth interviews with parents by the charity.

Children with conditions other than cancer often find support is unavailable

The report, Parents Matter, acknowledges that in some areas support is readily available, citing cancer services. It also credits NHS England’s role in improving access to perinatal mental health services more generally – it is a key priority in the NHS Long Term Plan.

But Parents Matter says children with conditions other than cancer, particularly more rare diseases and disorders, can often find support is unavailable. This means what is available may depend on charities, such as themselves, and hospices or on whether parents can afford to pay for private counselling.

Family support worker job is 'amazing' but the service struggles to cope with demand

Angie Pinnock
Angie Pinnock

Angie Pinnock is one of Rainbow Trust’s 60 family support workers.

The role involves providing practical help to families, from comforting a grieving parent to looking after siblings, attending appointments, cleaning or dog walking. Basically, anything that helps relieve the pressure on families when they are going through what is perhaps the most traumatic experience many will ever face.

Understandably it can be emotionally draining – each family support worker receives regular counselling – but Angie still describes it as an ‘amazing job’ to be there for people when they are most in need.

But she says despite families valuing the support, the service still struggles to cope with demand.

It is almost entirely paid for through fundraising. The NHS provides no financial support, while just two local authorities out of 152 contribute.

Angie says: ‘The hardest part is when we are unable to help families because we are already at full capacity. We need so many more family support workers.’

40,000

children In England living with life-limiting or life-threatening conditions

Source: Rainbow Trust

The report says it is impossible to know the scale of unmet need. But it does point to research carried out by other organisations, which suggests it is significant.

A study by Together for Short Lives found nearly one in five clinical commissioning groups did not fund bereavement care, while 84% of families surveyed by the charity said they felt isolated and alone after diagnosis.

The parents interviewed by the Rainbow Trust spoke about feelings of shock, fear, anxiety and helplessness through to physical reactions, including headaches and chest pain. They said close relationships are often put under strain, and described how feelings of loneliness and isolation can develop.

Even when psychological support is made available it is not always offered at the most helpful time or location.

One mother told how a psychologist visited her in hospital when her daughter had just woken up from an anaesthetic and was throwing things round the room.

Another said when she received support she was treated as a ‘mum, not a person’.

Fear of judgement or stigma can also act as barriers to accessing support when it is there, the report says

Not only psychological support is needed

WellChild nurse for children with complex health needs Rhian Greenslade says the Rainbow Trust is right to highlight the struggles parents face. The charity also runs support networks for parents, but Ms Greenslade says NHS help is ‘minimal’.

£1,014

cost of three hours of support a week for three months by a Rainbow Trust family support worker

Source: Rainbow Trust

‘It’s often more available in oncology and few speciality teams only. Children on general wards, and their parents and carers, have less access and will seek support from ward staff, charities, community support groups, or other parents and carers, for their emotional stresses.’

But Parents Matter says it is not only psychological support that is needed. Practical help, such as transport to appointments, looking after siblings and ensuring parents have some time for themselves can reduce stress.

RCN professional lead for children and young people’s nursing Fiona Smith says this is an important issue. ‘While the treatment is rightly focused on the child, it’s important parents and other family members are supported as well.

‘Nurses are trained to recognise these issues and with the right resources can offer support in or outside the hospital environment.

‘We do, however, need to see a greater investment to ensure that nursing teams have the time to access training as well as ensuring services are integrated so that all those involved can access help in the most appropriate setting.’

Tips for children’s nurses

The Rainbow Trust wants more investment in training and specialist psychological support, but it says there are relatively simple steps that frontline staff can take too.

1 in 5

clinical commissioning groups do not fund bereavement care

Source: Rainbow Trust

Rainbow Trust director of care Anne Harris, who has worked as a children’s nurse, says: ‘Nurses are incredibly busy. We should not expect them to have specialist skills, but taking the time to ask, and to be caring and compassionate can make a big difference.

‘It’s difficult. A lot of parents will say they are fine, but we would encourage nurses to see past that, to look out for the ones that are struggling.

‘Ask them how they are feeling today. Make it about the immediate here and now.

‘Encourage them to have breaks and look after themselves – they need to be well if they are going to be there for their children.’

‘I was told I could lose my children’

Zayd Kara (right), who was diagnosed with leukaemia aged two, with his brother Hamza and sister Safina
Zayd Kara (right), who was diagnosed with leukaemia aged two, with his brother
​​Hamza and sister Safina

Banin Kara’s son Zayd was diagnosed with leukaemia just after his second birthday.

He developed pneumonia and needed transfusions and, at one point, a nasal feed. He became bed-bound and unable to talk.

Banin says: ‘We had a really hard time. I was so scared.’

She has two other children and was struggling to get them to school. She had no family nearby and her husband worked some distance away from their home in Newcastle.

She asked for support, but was told none was available. When she continued to press for help, she was told that if she could not care for her children then they would need to be taken into foster care.

In the end, she got some support for a local church group and the Rainbow Trust, which provided her with a family support worker.

But, four years on, she says she is still angry about the lack of statutory support and the way she was treated. ‘I was really upset. I’m still upset.’


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