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Children let down by brain injury care gaps

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An in-depth study conducted in the US and submitted to the American Congress outlines many issues hindering the delivery of rehab to brain injured young people.

While carried out by US-focused organisations – the Centers for Disease Control and Prevention 
in collaboration with the National Institutes for Health – it offers insights for child brain injury treatment globally.

The extensive paper, The Management of Traumatic Brain Injury (TBI) in Children: Opportunities for Action, suggests a lack of knowledge, infrastructure and consistency in services is at the heart of problems in getting young people the long-term treatment they require.

Annually, TBIs in children (aged 14 and under) in the US cause around 640,000 A&E visits, 18,000 hospitalisations and 1,500 deaths.


The leading causes of these incidents are unintentional falls and being struck by or against
 an object, whereas for those 15-24 years of age, the leading causes were motor vehicle crashes and falls.

Sports and recreational activities accounted for an estimated 325,000 A&E visits among children and teens.

Against such numbers, the report warns: “There
is frequently an incomplete understanding about the effects of TBI beyond the initial injury among parents, healthcare professionals and educators.

This often creates barriers to optimising outcomes for children across their lifespan, including
the achievement of high school graduation employment, and engagement in a healthy lifestyle.

“It is widely recognised that children with
 brain injury are under-identified for health and educational services and under-served by existing support, placing them at risk for poor health and educational outcomes.

“Understanding the gaps in care and developing approaches for optimal assessment, access to services and service delivery is critical to ensuring that children with TBI have the best possible treatment and outcomes.”

One of these gaps is a “substantial variation” in acute injury care for children. “Not only are there inconsistences in TBI assessment, but also in the comprehensiveness of discharge recommendations for all severity levels of TBI,” the report says.

Other gaps include:

• A lack of monitoring of children with a TBI over a prolonged period of time a er their injury
• Poor awareness of the implications of brain injury and possible pathways among parents
• Difficult access to schools-based support services
• Following concussions, a dearth in ‘return to play’ guidelines for activities beyond organised sports
• A drop-o in access to care following the transition from adolescence to adulthood
• Limited “TBI recognition” training for professionals involved in the care and support of young people
• A lack of hard evidence and research on long-term outcomes for children with TBI

Although the report focuses largely on the US, its findings mirror many of the challenges
faced in the UK, says Katy James, head of the Children’s Trust’s brain injury community service.

“Our experience of supporting children in the community is that all too often the full impact of a child’s brain injury is not recognised and in many cases the injury is forgotten about as the child gets older.

“Children and young people with acquired brain injury often experience ‘hidden disability’ – cognitive, communication and emotional difficulties that are not immediately apparent or are not understood by care givers or educators.

“We also know from experience that these difficulties can become more of a problem as children face the challenge of moving into adolescence and towards adulthood.

“And yet we find that support services in the
UK are limited and often there is a lack of collaboration between health, education and social care. Provision can be haphazard and influenced by postcode, the nature of the injury and parental ability to have a voice for their child. Young people moving from children to adult services often hit a ‘black hole’.

“While recent developments from regional networks and awareness-raising activity is promising, there remains no national framework and we are still a long way off from a cohesive and equitable UK model of provision for children with acquired brain injury. More needs to be done to build the evidence base and research the long-term impact of ABI in order to shape services.”

 

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Insight

‘Don’t be alone, don’t be too proud to reach out for help’

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After Vasili Kalisperas was born a healthy baby, his jaundice was left undetected by midwives and led to him being left with cerebral palsy and needing round-the-clock care. Here, his mum Elena discusses the huge mental health challenges of being a parent in such a position and how she learned to admit it’s OK not to be OK 

 

I’ve always been a very optimistic and positive person, which I do think helps during such traumatic times, but that’s definitely not to say it hasn’t been a struggle. As equipped as you might be in terms of your outlook on life to deal with challenges, when something so traumatic happens to you, it is of course going to be a struggle to come to terms with that. 

No-one tells you how to cope, you can never prepare yourself for something like this. There is no right or wrong way to do things and you can only get through it as best you can. 

My husband and I dealt with things so differently in the early days. He found comfort in talking about what had happened to Vasili, by sharing a lot of information on social media, whereas for me I was more introvert, I didn’t want to do that.

I was diagnosed with PTSD, which stemmed from the fact our situation was so completely preventable. I became fixated with Vasili still being in the womb, when things were still fine, and I so desperately wanted to find a way to turn back time. I had a water birth with Vasili, and every time I had a bath I’d be in there for hours crying, reliving the whole experience of giving birth to him, feeling the exact pains I felt. 

My husband made sure I was cared for and was OK, but finding help was hard. I did try and get medical help but the waiting list was huge. I waited for over a year to see a therapist but I didn’t find it helpful – she wasn’t trained in my needs and was a general counsellor, so I didn’t get anywhere. I was then referred somewhere else, but that was in the same place I had my check ups when I was expecting Vasili, and that in itself was too traumatic. 

After being bounced around for a couple of years, eventually, I went privately and found an amazing therapist. It does take a huge amount of time and energy to relive the experience, but I found that opening up and talking about how I felt was so important. I also discovered EMDR therapy through these sessions, which was fantastic and really helped me so much. I realised how far I had come through taking that decision to open up and look for support. 

If you have a support network around you, then that can be vital in times of trauma. Even if friends don’t know quite what to say, the fact that they’ll listen can be so valuable. My mum and sister were always there, anytime I needed anything. There were times when no-one could say the right thing, no-one could fix what had happened, but just being able to talk and cry and share what I was going through helped me so much. You need to allow yourself time to grieve, as it really is a grieving process. 

In society, while things have thankfully changed massively in recent years, there is still a feeling for many people that showing emotions is a sign of weakness. There is still a stigma in admitting you’re struggling with your mental health, but I see that it’s like your physical health – you’re never going to breeze through life without any problems at all, it’s going to happen to us all at some point. No-one should ever be afraid to admit they’re struggling and they need support. 

Lockdown has been difficult for us all, and seeing the impact on the children and my oldest daughter in particular, has been awful. She is in high school and not being able to leave the house has had a big impact on her mental health. But as a family, we share our feelings and talk about it, and I teach my children the importance of positivity and an optimistic outlook to help them cope with challenges.  

In learning to deal with what you face and move on with your life, you need to accept it and forgive yourself by recognising it isn’t your fault. It has been a long journey for me – Vasili will be nine in May – but we’ve made so much progress. 

While Vasili and our other children are of course our priority, I’ve learnt the importance of making time for self love and care. Without making time for that, you’ll run yourself into the ground. For the last two-and-a-half years, the children have been at school every day, which has meant I’ve had time to take control of my mental and physical health. I started doing daily exercise, which began by making sure I got out to walk every day, and I now regularly go to the gym. It’s a big release for me. 

I’ve also reached a place where I’m able to look to the future and I’ve started my own business as a hairdresser, working from home in a salon we’ve created in an outbuilding. Being a hairdresser gives me a chance to help other people to open up and discuss anything that’s on their mind, which for many people may be the only chance they have to do that. And also, I’m training to be a personal trainer – I’m already a mental health first aider, and I’ve seen for myself the impact that exercise can have during the most trying times, so I think the combination of mental and physical wellbeing support is so important and I’d love to help people with those. 

For me, in being able to find acceptance of our situation, I’ve been able to move on and find time for myself and what I want to do with my life. I’ve definitely found my purpose, both as a mum and as a woman, and I’m in a much better place now. But without having the strength to open up, to reach out and admit I needed some help, I don’t think I’d have reached this point in my journey. 

The one thing I’d say to people who are struggling, whatever their situation or circumstances, is to talk. Don’t be alone, don’t be too proud, and reach out to someone. I’m so pleased I did. 

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Insight

‘I’m a rehab professional attempting to rehab myself’

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Having contracted COVID-19, which has now become Long COVID, assistant neuropsychologist Alarna continues to battle a number of effects, including fatigue. Here, she shares her reflections on her experience, which has enabled her to gain a greater understanding of her patients’ wish to return to their ‘normal selves’

 

My name is Alarna, and I am an assistant neuropsychologist at a specialist private neuro rehab hospital. I have worked in both supported living and rehabilitation settings for the past 14 years, with various mental health conditions, psychologically rooted illnesses, degenerative diseases, and rare neurological presentations.

Today in discussion with our company director responding to the question of “How are you?” I found that I had reached a new level of understanding for every patient that I had worked with. I found on some level I could identify with their journey as I am attempting to rehab myself. I answered, “I just want to get back to my normal self”.

In December 2020, I tested positive for the coronavirus and was severely unwell for a period of 2-3 weeks. I initially was unaware that what I was experiencing was anything other than being run down or having a common cold. It was not until day four when I woke up feeling as though someone was sitting on my chest, each time I moved I had to take shallow rapid breaths to remain upright and when I coughed it felt as though I was being punched with weighted gloves from all angles.

This was unlike anything I had experienced in my life. Being someone who would be over a cold within 3-4 days (and very ironically did not know how to properly rest) the situation was entirely foreign to me.

Having thankfully recovered some weeks later I began to find myself falling asleep involuntarily every 2-3 hours, I was still breathless on exertion (from walking up a flight of stairs to carrying a handbag) and generally feeling weak. After seeking advice from NHS 111 I was reassured that this was to be expected following a virus and should subside in a week or so.

Throughout this period, I had regular contact with my supervisors at work who were (and still are) extremely supportive, reassuring, and understanding. It was not until several weeks later that we discussed an action plan to help me ease my way back in to work.

This brings me back to today, four months after having COVID-19 and still suffering with chronic fatigue, occasional breathlessness, and migraines. I am unable to complete a full day at work and once I get home at approximately 3:30pm I have no choice but to stop everything and sleep.

Just a key point I would like to throw in here. Fatigue is not the same as being tired!!

I have been burnt out before, I have been exhausted, and I have been tired, but this unexplainable experience is not like any of the aforementioned. It is like an involuntary shut down. People who mean well advise me to just rest or sleep more not realising that I am sleeping up to 14 hours most days and still waking up feeling exhausted.

In my attempts to help the process along I have completely changed my diet, dropped 20lbs of excess fat, complied with resting when my body tells me to, and my energy levels remain poor. Some days it feels as though my speech is unnaturally slow and slurry, though when asking my colleagues, it is not so for the listener. In summary I cannot function without having a 2–3-hour nap in the early afternoon as well as a full night of sleep.

Though there are so many unknowns with this virus, from my experience I have learnt the following:

–       The importance of self-care and rest. Sometimes in the busyness of life what we think we are doing to take care of ourselves really is not self-care.

–       To appreciate the stillness and tranquillity of silence

–       Spending time alone and reflecting is so peaceful.

–       Your health is one of the most important things you have and needs to be a priority. Facts that I knew before but like so many, have taken for granted.

Personally, as a woman of faith I believe that this situation has and will work out for my good in the end, there is always a lesson or a positive to be taken from every experience. This has also fuelled my ever-burning desire to be instrumental in changing lives for the better, starting with my own.

This situation is only temporary but for many of my patients it is not and returning to their former self is a distant memory not to be realised.

I take this opportunity to thank my incredible supervisor/mentor at Renovo Care, Dr Anita Rose, and Margreet, as well as my amazing colleagues Ana, Chris, and Simone for being so caring and supportive during this difficult time.

Rest in peace to all of those who have lost their lives because of this horrible virus, including my dear Grandpa. May we find and be the solution! Stay safe.

Signed

A rehab professional attempting to rehab herself.

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‘This isn’t a threat – it’s an opportunity for revolutionary change’

Writing for HT World, Brian O’Shea, continuing healthcare advisor at the Spinal Injuries Association, urges commissioners to embrace change for the good of the patient.

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As a service user and patient advocate, I believe it’s important to always consider the patient perspective of going through the NHS Continuing Healthcare (CHC) process.

I think it’s important to recognise that when people encounter the CHC or local authority assessment process, it is more often than not the first time that they’ve engaged with the health and social care system.

This usually results in an overwhelming experience for patients, or their carers, as they have so many questions about the process.

It can therefore appear to CCG or CHC advisors that patient questions don’t really arise in a logical flow or sequence. They will often ask questions as they emerge in their minds, for example, “How does this thing work and how can I make sure my voice is heard?

What’s happened so far in the process? What happens next?” However, the most frequently asked question about the process is, “Who can I speak to?”

Brian O’Shea

It is really important to think of this experience not only from the individual patient’s perspective but also from anyone who is working with them to get through it, whether that is an advocacy organisation such as SIA or simply an interested relative.

Quite often when a patient or their relative contacts us, we start to ask them what we think are simple questions: Where are you? Have you had a check list done?

Have you had a referral made? However, as it is often their first experience dealing with the health and social care system, they just don’t know the answers.

Using a patient portal

Previous NHS CHC improvement initiatives have focused on answering this question by allocating a case worker to take individuals through the end-to-end NHS CHC process.

However, we know that this falls down because the individuals managing the process leave the NHS organisation handling the individual’s application, or there is a change in the contact details of the CCG etc.

And there are many more factors and variables that can disrupt the communications between the individual and the CCG, leaving the individual in the maze or even worse, just in the void.

And so, I think digitisation in this area of healthcare delivery is tremendously exciting.

I think that, through the trials of the last year, we have seen how empowering the move over to digitisation can be across the whole of the health and social care sector – when it is done properly.

In this spirit I see a patient portal as a potential solution to many of the questions the CHC process brings up for both patients and CCGs.

We once asked as an industry, “How do you address the issue of having a dedicated individual to take the patient through the assessment and care plan process from end-to-end?”

Well, the answer may just be that you don’t actually need an individual to take the patient through the process, maybe that can be achieved by a digital platform.

There is also a growing awareness amongst patients of the amount of personal information the NHS holds.

I think that one of the advantages of the patient portal on the digital platform, particularly demonstrated in the Digital CHC by IEG4, is that the CCG can make the data more transparent to patients and families.

Sharing the assessment information and the discussions from the MDT meeting builds trust in the process and ensures that patients and families are at the heart of the CHC decisions.

However, having a patient portal is not necessarily throwing open the doors and having absolutely no control of the information between the patient and the heart of the NHS. It is more about understanding the information that an individual needs to generate trust in the NHS CHC assessment process.

As advocates we recognise that, for some patients, if you gave them access to everything it could be just as overwhelming as not giving access to any information. So, it is important for the CCG to build flexibility into their digital platform and strike the appropriate balance for each individual patient.

An additional advantage with a digital platform, is that you don’t have to wait for 9-5 office hours to get an answer to your questions, you can access the information yourself at a time to suit you.

The platform can answer the questions of who has already been involved and who is going to be involved, what the next steps are, and it can also keep track of what’s already been done. No chasing telephone calls taking up time of health and care professionals and an ability for patients and family members to take control.

The Future’s bright, the future’s digital

The path to the digitisation of healthcare services has not been straight forward, and there is still some work to be done in ensuring that safety sits atop the agendas of CCGs when it comes to its adoption, however seeing how platforms like IEG4 take steps to improve this is encouraging.

Both as a patient and as a patient advocate, I cannot tell you how excited I am about the move to digitisation of Continuing Healthcare.

I honestly think it has the potential to be revolutionary.  I think that when used appropriately by CCGs it could be a revolutionary step forward in the quality of decisions made, in the amount of time that it takes to make decisions and it has the potential to be revolutionary for the individual patient experience of the NHS CHC assessment process.

I would really encourage CCGs and local authorities not to see it as a threat. To me it is just such a great opportunity and I think it is really pivotal in changing how we engage with Continuing Healthcare.

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