TALKING TO CHILDREN

How to talk to

children about your stroke or brain injury

Stroke survivor and GripAble ambassador Kate Allatt shares her insight and personal experience

A parental stroke or brain injury can be a traumatic event for most young children and access to the right information and support is vital to help them cope. Having open and honest conversations about stroke, brain injury and loss is the first step, followed by signposting and guiding children towards healthy ways to manage their emotions. Stroke survivor and GripAble ambassador Kate Allatt draws on her personal experience of parenting young children whilst recovering from her stroke, and offers helpful advice and tips for talking to your children about your stroke or brain injury Effects of parental stroke or brain injury on children When I experienced my stroke, my children were at the tender ages of four, eight and ten and the event inevitably had a devastating impact on all of them in very different ways. We know that a child’s brain is the most under-developed organ in their body. As such, any serious trauma, such as the sudden illness of a parent or close relative, can cause physical changes to the structure of a child’s developing brain. In my family’s case, I believe my stroke challenged my children’s ability to process emotion and, in truth, there were profound consequences to my maternal relationship with them. This has been by far the hardest consequence of my stroke that I’ve had to deal with. Some children may choose to push away the pain and confusion they feel by shutting their parent out and limiting communication with them. Some may adopt unhealthy lifestyle choices or experience severe anxiety as a result of the event. Others may find it hard to form loving relationships themselves. More understanding and support are urgently needed to equip the children of stroke and brain injury survivors with the tools they need to cope with their trauma and help preserve parent and child relationships. There is information out there for parents of children who have experienced a stroke or brain injury, but support for young children after a parental stroke is limited and often sadly overlooked.

Talking to children about stroke I know I’m not alone in struggling to cope with the aftershocks of my stroke as a parent. It is extremely challenging having to manage your own emotions, physical symptoms, and changes in your mental state on top of considering the feelings of those close to you, particularly children who may not be able to fully understand the changes in you and why things can’t continue as normal now you are home from hospital.

In my family’s case, I believe my stroke challenged my children’s ability to process emotion and, in truth, there were profound consequences to my maternal relationship with them

Here are some tips for approaching the topic of your stroke or brain injury with your children:

Remain calm – this can be particularly challenging after a stroke or head injury, but it is important to keep your cool and reassure your child, as children naturally seek support from adults when traumatic events have occurred

Pick a good time – aim to look for natural openings to have a discussion rather than sitting down for a formal conversation to help your child feel more at ease. Encourage family discussions that allow family members to share their emotions to show children it is ok to express their feelings about your stroke too

Acknowledge their emotions – if a child admits to a worry or a concern, try not to dismiss it as it may come across as criticism. It is often enough to simply confirm what you are hearing and show you are listening and accept their feelings. Let your child know it is completely normal to experience anger, guilt and sadness and to express these in different ways

Understand that children cope in different ways – there is no one ‘right’ way to cope with a major life event such as parental stroke or brain injury – some children may want to spend more time alone, others may turn to friends and relatives for support

Look out for signs of trauma – children may not show their true emotions in the first few months following an event, but once the initial shock wears off, symptoms of anxiety and worry may begin to show

Know when to seek professional help – if you are concerned about any of the behaviours your child is displaying, it is important to seek help from your GP or mental health professional as soon as possible

Look after yourself – remember you are recovering from a serious condition and need time and support to help you get better. Discuss any concerns with friends and relatives and, if possible, lean on them for support and help at home.

Oliver Zangwill Centre to close

The Oliver Zangwill Centre, known nationally for its work in delivering neuro-rehabilitation, is to close, it has been confirmed. The announcement has been met with anger and devastation by charities and those the Cambridgeshire centre has supported over the years, with fears raised about what resources can fill the gap its closure will leave. The Oliver Zangwill Centre has supported people aged 16 to 64 who have nonprogressive brain injury and require cognitive rehabilitation since its opening in 1996, with patients coming from well beyond its Cambridgeshire and Peterborough CCG area. In that area alone, around 4,000 people are admitted to hospital each year with an acquired brain injury (ABI) diagnosis, although Cambridgeshire and Peterborough CCG claims referrals to the centre have decreased in recent years. In a consultation earlier in the year, involving charities including UKABIF and Headway – as well as local people, former patients, and those with professional and personal interest in neuro-rehab – many expressed their views as to why the Oliver Zangwill Centre is a ‘lifeline’ for so many and cannot be lost. However, sadly its closure has now been confirmed, with a recommendation made for it to take effect from June 30. The announcement has been met with frustration, particularly at a time when advances are being made on behalf of ABI survivors through the creation of the ABI Strategy. Chloe Hayward, executive director of UKABIF, told NR Times that confirmation of the closure is “devastating”. “There are so few of these specialist units, and the Oliver Zangwill Centre is right up there with the best of them. Many people will suffer as a consequence of its loss,” she said. “Specialist neuro-rehab gives people the leg-up to get back to the best of their ability, and by removing this centre that chance is diminished. “I worry that because decision making is going to be devolved, we will see more of this. When all decisions are taken on a regional basis, I fear that we will see more of this and the regions not providing what is needed. It’s a very big concern.

Specialist neuro-rehab gives people the leg-up to get back to the best of their ability, and by removing this centre that chance is diminished

“While Chris Bryant and Gillian Keegan are spearheading national policy, we also need to consider what is happening regionally, and that must align for it to have the positive effect we need.” Headway said it believes a key priority for the ABI Strategy should be the equitable access to specialist neurological rehabilitation and support services – a concept completely undermined by the decision to close the Oliver Zangwill Centre. “At a time when the government is in the process of putting together a ground-breaking pan-departmental ABI Strategy to better support people living with an acquired brain injury, we should be looking at creating more of these centres of excellence, not closing them,” said chief executive Peter McCabe. “Each year, around 350,000 people are admitted to UK hospitals with an acquired brain injury. For many patients, early access to specialist neurological rehabilitation will significantly increase their chances of making a meaningful recovery. “And yet currently access to specialist care such as that provided by the respected Oliver Zangwill Centre varies significantly across the country. “Rather than improve lives, ultimately the cost of this move will largely be paid by brain injury survivors and families unable to get the help and support they deserve and need. “Whilst hugely disappointed, this strengthens our resolve to make sure the ABI Strategy is strong enough and robust enough, so that every survivor has the best chance at a meaningful and fulfilled life after brain injury.”

As the first brain injury service in the UK to achieve an outstanding rating from CQC, Voyage Care continues to invest and further develop its services to ensure it remains a leader in brain injury rehabilitation, care and support.

Voyage Care operates both registered care homes and community services nationally for people with learning and physical disabilities, with brain injury rehabilitation (BIR) being a key part of its portfolio. With ongoing investment in the creation of new units - and the expansion or full refurbishment of existing sites - Voyage Care works closely with Commissioners and local authorities around the country to respond to the ever-increasing need for BIR support on both a residential and community basis. And its focus on enabling its service users to regain independence and achieving goals is something it believes sets it apart. For Voyage Care, the plan for discharge begins even before a person has entered their service. With specialist placement managers who work with medical professionals and the multidisciplinary team (MDT) from the earliest days and throughout the journey, they work tirelessly for and with every client to achieve the best possible outcomes. “When we assess somebody for our rehab service, we're assessing them for discharge, effectively,” says Alan Marshall, managing director of the Central West region for Voyage Care. “They'll probably be with us for around 18 months, maybe two years - or in our slow-stream service, that could be a lot longer - but we're assessing their ability to rehab, and planning for whatever independence looks like for them. “We’ll draw a picture of what that person wants to achieve, based on our assessments and their condition, and we'll overlay that with their personal goals. “Their pathway to rehab might not always be as straight as it could be for others, but we’ll always be there to support them at every stage. And we get some very good results from our approach.” The strong outcomes are many, but one that springs to mind for Alan is the first resident to be discharged from Voyage Care’s new flagship brain injury rehab site, Devonshire House in Manchester, after its opening last year. This man secured discharge after only six months, with the bespoke pathway and rehabilitation he received changing his life in a short period of time. “When you think of when we opened, and the challenges we’ve faced with COVID and staffing, the fact he was able to rehab within six months and go back to his family was a real success,” says Alan, who has worked in health and social care since 1990. “While that is a new opening, the way the team work together already is fantastic. But that’s what we have across the whole group, that commitment, the levels of work, the brilliant results they’re helping people to achieve. “I'm always humbled when I go into a service to see just how well our staff know the people, there’s a real sense that they’re advocating for them, and that’s great to see.” To continue to deliver these life-changing outcomes for clients, Voyage Care continues to invest in its facilities and in-house training. The development of its facilities is significant and ongoing. In addition to Devonshire House, Voyage Care has recently opened a new brain injury rehabilitation service in the West Midlands, with 24-bed purpose-built units planned for the Wirral and Glasgow within the near future. Another service in Leeds, already one of the newest in Voyage Care’s portfolio, is set to be expanded further, and others in the group are seeing extensive refurbishments. “There's a lot of investment, which I think shows the work we do and the results we get, but also our model, which is very niche in the market,” says Alan. “A lot of other brain injury services tend to go down the healthcare model with a lot of fixed costs, but we like to personalise everything. The costs for Person A will probably differ from Person B based on their needs, and clinical interventions are funded on a sessional basis, so we can be flexible on prices. “We work very closely with commissioners and this works very well.” And for the continued development within Voyage Care’s management team, they work with clinical psychologist Dr Andrew Worthington on learning and best practice. “Through this learning and development programme, which has ten modules, we are coming together as a team of managers and deputies to deal with practical problems people face, and talk about how to manage the situation and work through the process together,” says Alan. “It’s very important in our ongoing development, and shows how we are always learning and wanting to do more, to do the very best for the people in our service. “I'm always being challenged, and I think my management team are always being challenged - quite rightly - about how we can make things better, how can we do things better? And that's really positive that we can work like that, and helps us continue to achieve what we do.”