Impact of lockdown on brain injury survivors and families
More than half of brain injury survivors have lost access to rehabilitation services as a result of COVID-19 lockdown measures and now fear for their futures, according to a new study published by the charity Headway.
On this page:
- Brain injury survivors ‘fear for future’ due to lost rehab
- Jane's story: 'I can’t bear to imagine a world without Headway'
- Brain injury and lockdown: Key findings
- Download the full report: The impact of lockdown on brain injury survivors and their families
Brain injury survivors ‘fear for future’ due to lost rehab
Early rehabilitation following brain injury can be crucial in helping survivors to regain a degree of independence and relearn lost skills, including walking and talking. But 57% of those who sustained their injuries within the past two years say their access to specialist treatment has been negatively impacted.
A further 64% of those living with the long-term effects of brain injury reported a deterioration in their mental health as a result of the measures implemented to control the spread of COVID-19, while almost two thirds say they now fear for their futures.
The results show that:
- Loss of rehabilitation may lead to a worsening of the long-term effects of their brain injury
- Without appropriate support brain injury survivors will be left with lasting damage to their psychological wellbeing
- Lockdown has had a major negative impact on brain injury survivors and their families
- Access to support is vital to ensure that brain injury survivors and their families can cope
- The health and social care sector must urgently receive ring-fenced funding
Jane's story: 'I can’t bear to imagine a world without Headway'
For the past five years, 52-year-old Jane Hallard from Gloucester has relied on her local Headway group to help her rebuild her life following a subarachnoid haemorrhage in 2015.
Jane was helping her son to clean his car when she felt like her head had been hit with a “sledge-hammer”. After collapsing, Jane was rushed to hospital where she underwent life-saving surgery before spending the next eight weeks in hospital.
The resultant brain injury changed every aspect of her life, leaving her with chronic cognitive fatigue and mental health challenges. It also led to the collapse of her marriage.
“Without the support of my local Headway I wouldn’t be able to get through each week,” said Jane. “In fact, without their support, I wouldn’t be here at all.
“COVID-19 has exacerbated my feelings of anxiety and I have struggled to cope with the changes to my routine, but Headway has always been there when I needed them, and their support has been crucial over the past 12 weeks.
“I can’t bear to imagine a world without Headway in it and I really fear for my future if I can no longer access their specialist support.”
Brain injury and lockdown: Key findings
- 57% of people who sustained a brain injury within the past two years reported that their rehabilitation has been negatively impacted
- Two thirds of respondents reported a negative impact on their psychological wellbeing
- 62% respondents fear for their future
- 50% have lost access to vital support that helps them to cope
- 42% say their rehabilitation has been negatively impacted
Brain injury survivors fear for their futures due to lost rehab
Over half (57%) of those who sustained their brain injury in the past two years and 42% of all respondents reported that their rehabilitation had been negatively impacted by lockdown. Rehabilitation aims to help the brain learn alternative ways of working in order to minimise the long-term effects of brain injury. A loss of rehabilitation, particularly in the early stages but also in the longer-term, can lead to a lifelong impact on a brain injury survivor’s level of disability, and the entire family’s ability to cope.
Almost two out of three (62%) respondents reported an increased fear for their future due to lockdown, contrasting sharply with the results of a 2017 Headway study that showed just 28% of people had negative feelings about their future.
Respondents reported being confused about changes in their daily lives, difficulties in coping with the effects of brain injury with less contact with family and friends – often a vital source of support that helps them to cope.
Two thirds of respondents report a negative impact on their psychological wellbeing
Responses to questions about the impact of lockdown on psychological wellbeing is of major concern, with two thirds of respondents reporting a negative impact on their psychological wellbeing and mental health.
In addition, over half of respondents reported an increase in their frustration, anxiety, stress, fear of the future, loneliness and depression with up to a quarter reporting marked increases.
This is particularly troubling among brain injury survivors as the psychological effects of brain injury can often overlap with or exacerbate those of mental health conditions, making these effects significantly more difficult to cope with.
Impact on relationships
Specific responses of particular concern include the increase in loneliness reported by 73% of people living alone and 70% of partners reporting increased stress.
Lockdown was reported to have a significant impact on relationships with family and friends for people with brain injury and their relatives. Whilst around 40% of respondents reported no change in relationships and up to 20% reported positive changes, 37% reported a negative effect on relationships with friends, 24% with partners and 30% with family as a whole.
Again, these changes should be seen in the context of relationships that may already have been experiencing significant strain due to the effects of brain injury and the pressures of caring. A 2018 Headway study showed that 69% of brain injury survivors experienced loss of friendships and 44% reported breakdowns in their family relationships even without the additional impact of the recent lockdown.
In contrast, 27% of respondents reported a positive change in relationships with their neighbours. This highlights how local communities have come together to support each other during COVID-19 and the lockdown, with many neighbours having communicated and supported each other more than ever. While this is a welcome and positive finding of our study, the informal support of neighbours cannot be expected to replace specialist services such as Headway groups and branches and other rehabilitation services.
Half of respondents have lost access to vital support to help them cope
In terms of support during lockdown, half of respondents reported a loss of vital support that helps them to cope, with 51% highlighting less contact with their family and friends as a particular issue alongside the loss of rehabilitation services.
In addition, 37% of people with brain injury have struggled to cope without regular contact with other survivors, a vital aspect of the face-to-face support that Headway groups and branches provide.
Download the full report: The impact of lockdown on brain injury survivors and their families.
If you'd like to help support Headway's local groups, branches and national services, you can write to your local MP to tell them how the charity has supported you.