Schools are to be recognised for their commitment to supporting children with acquired brain injuries (ABI) and their families through the introduction of a new accreditation.
The Child Brain Injury Trust has created the ABI Aware School Award, to help both primary and secondary schools develop best practice around brain injury and its often hidden consequences.
A leading researcher has suggested that, on average, in a class of 30 children, three will sustain a brain injury at some point in their childhood, with at least one being a serious injury.
Each year, at least 35,000 children will be taken to A&E with a head injury, although the actual number of those sustaining ABI is thought to be up to 60,000, when taking into account non traumatic brain injury such as illness, stroke and tumours.
However, due to the ‘unseen’ nature of many of the effects of ABI, the true impact of this on children’s lives is often underestimated or not recognised, and in many cases a child’s brain injury is often undiagnosed.
To help support such children, as well as their families, the Child Brain Injury Trust has developed a framework comprising seven key areas and 39 individual criteria for schools to address, which they will be supported to achieve ahead of their assessment for the award, with reaccreditation being required every three years.
The framework covers a spectrum of aspects from identification and awareness of ABI, to transition or return to school, and how the individual child and their family are communicated with.
Teachers will be able to access free CPD-accredited training online, alongside pre-prepared lesson plans to enable them to support pupils in developing their awareness of ABI.
The ABI Aware School Award has been in the planning for several years, and went was trialed last year, with one academy school in Herefordshire set to become the first in the country to secure the award in the coming months. The award is now set to be rolled out nationally.
The Child Brain Injury Trust has collaborated with the Eden Dora Trust for Children with Encephalitis on the development of the award.
“The vast majority of children return to mainstream school after ABI. For adults, they may need to go to specialist rehabilitation, but for children and young people, their ‘rehab’ takes place in school. While teachers are experts in teaching children, they may not be equipped to deal with brain injury – and that is the reason for the Award,” says Louise Wilkinson, head of information and learning at The Child Brain Injury Trust who is leading the initiative.
“The Child Brain Injury Trust has always promoted awareness of ABI within education because it’s so important, but there is a still a lot of work to do.
“I would liken ABI to being regarded how ADHD was five to 10 years ago. If you go into a school now, everyone knows what ADHD is, and that’s where we want to get to with ABI. We want every child to achieve their potential.
“We felt the best route forward was to develop a programme without charge to encourage schools to take a brave step and be proactive in learning about ABI. Even if they don’t think they have any children in their school with a brain injury, statistically there probably will be, so it’s about recognising the signs and supporting the child from there.”
Through the specialist training provided and identification of areas to look out for with children’s behaviour and the support they need, schools can play a vital role in getting to the root of causes of behavioural or learning issues, says Louise.
“When a child has a head injury and goes to A&E, the majority of parents are told their child has made a full recovery. Often they’re given a concussion letter and off they go home, and in some NHS Trusts it isn’t recorded as a head injury if they’re not admitted for two nights or more,” says Louise, a past winner of the UKABIF Stephen McAleese Award for Inspiration by an individual in the field of ABI.
“They’re walking wounded, they look fine, sometimes an injury is never picked up at all and the young person is just perceived as being lazy, and poorly behaved; these problems can then lead to exclusion and potentially into the youth offending system. Maybe physically they have made a full recovery, but it’s the unseen impact which is often not recognised.
“It can be much later when things are noticed – I remember one family with a 14-year-old son who started going off the rails, his parents were beside themselves and paid for a private paediatric clinical neuropsychologist. The consultant opened the file and asked his parents ‘Do you think this could be related to the fractured skull he sustained aged two?’
“Through the Award, we’re trying to create much greater awareness of child brain injury, and increase the knowledge of how to recognise the signs and most importantly how to support the child or young person.”
The Award is expected to be a 9 to 12 month process for most schools, with Louise and the Child Brain Injury Trust team supporting schools throughout, with ongoing feedback being given throughout the process.
“We don’t want anyone to fail and will do all we can to get every school to succeed. It may well be a case of them having to implement some new processes to be given the Award, or simply providing more evidence to show what they’re doing, but we will work with schools to help them become ABI Aware,” says Louise.
“We want the whole school team to buy into this from the leadership teams to the staff, and would urge any school who would like to work towards attaining the accreditation to get in touch.”
Sue Ryder looks to increase neuro-rehab provision
Plans are being considered for the South East, in response to significant demand for its specialist resources and care
Neurological care provider Sue Ryder is drawing up plans to increase its neuro-rehab provision in the South East of England, in response to the growing demand for its specialist resources.
Its neurological care and rehab centre, The Chantry, is one of limited number of resources in the area to deliver Level 2 rehabilitation, and from its site in Ipswich, takes in patients from across Suffolk, Hertfordshire, Essex and Sussex.
However, having doubled its Level 2 beds from three to six, the demand for its acute rehab far exceeds availability – and while further current expansion is curtailed by the size of the building, in the longer-term, the team hope to develop provision further.
In the nearer future, The Chantry is looking at ways to accept more people into its slow-stream rehab service and also look at outpatient and community care services, to help meet demand in an area where the need is particularly high.
The charity recently held an event, Establishing Effective Neurorehabilitation Services, which explored how providers and Commissioners could maximise opportunities.
“We came away from that buzzing with thoughts of what we wanted to do, and what Sue Ryder wants to do, and that is give more care to more people,” Dr Kirsty Kirk, head of clinical services at The Chantry, told NR Times.
“We do have a waiting list and demand for our beds has always been high, as we’re quite unique in this area, but over time demand for this service has changed, and we’re being approached by Commissioners from a wide area.
“The long-term plans are most definitely to grow that (Level 2) service, but we’re constrained by the building, so that will take a bit of planning.
“But with our slow-stream neuro-rehab, we do have more opportunity to look at what more we could do. That is a slightly longer journey at six to 12 months, and while we’re currently at capacity, probably in the short- to medium-term, we’ll look at a plan around how we can increase resources.
“I’d also love to see us reach out into the community, supporting people after they leave our rehab support. This is all very much needed.”
The lack of specialist inpatient resource across the country has led to a significant increase in the need for community and at-home support.
To help meet that, in conjunction with The Chantry’s sister service, Stagenhoe in Hertfordshire, it is looking at what more can be offered.
“We will continue to take the acute, very complex cases at The Chantry, as we offer specialist neurological care and do it very well – but we can look at what we can offer in other settings,” says Dr Kirk, who returned to frontline care in June 2020 after being inspired by the response of healthcare to the COVID-19 pandemic.
“There is a definite need and Sue Ryder is looking to address that need. We’ll look at the business case for more staff, more space, more resources, see what that would look like.
“But personally speaking, I’d love to look at outreach and even outpatient services, to see how we can extend our care to more people.
“The challenge with that currently is that it’s difficult to get the staff as the whole healthcare sector is tired after COVID, many people are tired or are leaving – but we’ll look at it and hopefully that’s a plan for the medium-term.”
As a key resource in the South East, The Chantry supports people aged 18 and over with brain injury and neurological conditions, through both its acute and slow-stream services, and continues to invest in therapy equipment to ensure it is delivering the best possible person-centred rehab.
“We are quite unique in this area as a specialist neuro-rehabilitation provider, and for us, it’s vital that we look at the needs of every individual,” says Dr Kirk, a nurse who has been professional lead in the Schools of Nursing and Midwifery in Cambridgeshire and Suffolk.
“It’s important that we gather information around each individual and their experience, not just biological and physiological, but around their goals and achievements too.
“It’s essential to work with MDT members to achieve that, I’m particularly proud of the good links we have – in addition to our dedicated team, which includes an occupational therapist, physiotherapist, rehab assistant and registered nurses, we have good links with a speech and language therapist, neuro-rehab consultation and local GPs.
“It’s that team focus, in addition to the quality of our therapy and the continued investment in what we offer, that makes us really stand out.”
Sir Michael Palin supports The Brain Charity appeal
The much-loved acting and comedy legend donated his time due to his personal experience of the trauma of neurological conditions
A charity which supports people with neurological conditions has won the support of Sir Michael Palin in making a national fundraising appeal.
The Brain Charity is the focus of a BBC Lifeline appeal, which shows its work to a national audience by telling the stories of three people who have benefitted from its support.
Acting and comedy legend Sir Michael donated his time to present The Brain Charity’s appeal from his personal experience of the impact of neurological conditions – his wife was diagnosed with a benign brain tumour more than 25 years ago, and he saw his Monty Python colleague Terry Jones face the effects of dementia before his death last year.
He said: “Neurological conditions have the potential to wreak havoc on the lives of those they affect; something my family and I can relate to.
“My wife was diagnosed with a benign brain tumour more than 25 years ago, and it was a worrying and frightening time for our family.
“That’s why the important work of The Brain Charity is a cause very close to my heart.
“I am delighted to support them by presenting their Lifeline appeal, and hope the film encourages many much-needed donations for such a worthwhile cause.”
Over the past month, the BBC Lifeline crew has travelled across the UK to see first-hand how The Brain Charity helps people with all forms of neurological condition to lead longer, healthier, happier lives by providing practical advice, emotional support and creative activities.
They filmed with mum-of-three Lindsey, from Dunbar, Scotland, who was diagnosed with secondary progressive MS in her brain in October 2020.
The 60-year-old former deputy headteacher went from being a highly paid, hard-working professional to wondering how her family was going to cope.
She found the practical advice she received from The Brain Charity’s information and advice officer Janet ‘life-changing’ and said this reminded her that there was still a future for her post-diagnosis.
The eight-minute film also features Rachel, 46, from Cheshire, who spent two weeks in a coma and had to learn to walk and talk again after experiencing a brain haemorrhage.
After an operation to remove the tangle of blood vessels which had cause the haemorrhage, Rachel began to make a physical recovery, but struggled mentally.
She found it difficult to leave the house due to low confidence around her speech, which had been affected, and experiencing debilitating night terrors that she was back in intensive care.
In May 2020, she was offered six weeks of free counselling from The Brain Charity – which she said was a lifeline. She has since decided to give back by becoming a volunteer phone befriender.
Finally, the feature will focus on 18-year-old Sammee, who has Autism Spectrum Disorder (ASD) and recently moved to Liverpool from London.
The Brain Charity’s Brain Changer Arts Project sessions – which combine neuro-physiotherapy and dance – have helped him gain confidence, express himself creatively and make new friends.
The Lifeline appeal will be available to watch on BBC iPlayer here
All funds raised from the Lifeline appeal will go towards The Brain Charity’s Sixmas appeal, which is raising £60,000 for urgent mental health support for the one in six people left out in the cold to deal with their neurological condition alone this Christmas.
Breathe Care creating ‘new generation’ of ABI support
The provider is creating an initial two new independent living developments, with more planned
A care provider is creating a new generation of independent living accommodation to maximise the recovery potential and future opportunities of people living with acquired brain injuries (ABI).
Breathe Care is set to open two new developments in the coming months – comprising a total of 17 one and two-bedroom apartments – to help bring new and much-needed choice in ABI provision.
Both developments, in Wellingborough, will have an integrated multi-disciplinary team (MDT) on site around the clock, which clinicians specialising in neurotrauma and ABI rehabilitation.
And plans are already underway for Breathe Care to expand its accommodation and care provision further across the country. Kettering has been identified as the next location, with hopes to bring 14 apartments to the town by the end of 2022, followed by a move into adjoining counties.
Breathe Care has shaped its ABI model based on the expertise of its leadership team, bringing together years of experience spanning brain injury rehabilitation and care, commercial development, supported living and architecture and design.
Its new developments – flagship project, St Heliers, and Edwards Chambers – build on its experience of operating independent living apartments in specialist mental health care across Northamptonshire for over a decade.
“We did a lot of research into what the current offering for long term living with slow stream rehabilitation in ABI looks like in this area and realised that we could make a really big difference,” says Stephen Crouch, founder and chief executive of Breathe Care.
“A lot of the client group is aged between 20 and 30, but the choice is often living in an HMO or care home with older people. Independent living apartments, done at a high standard, can bring huge benefits to this group in particular. Our projects are very specialist and answer an exact need.
“Not only are they beautiful apartments, but they can help to reduce anxiety and anger through clients having their own space and privacy, while having the support there 24/7 as and when they need it.”
The combination of living space designed for the exact requirements of its residents, coupled with a specialist MDT on site that includes specially-trained support staff, is already helping Breathe Care and its model to stand out from the competition, says Stephen.
“Because our team is there around the clock, and the clinicians or Amanda are there, we are creating a new level of support. We can introduce new or better processes for these people as soon as they are needed, which will lead to better outcomes,” he says.
While the focus is on getting everything ready for a January launch for St Heliers, Breathe Care is also turning its attention to future plans and replicating its model elsewhere in the country.
“For now, the main thing is getting the care team established at Wellingborough. This style of independent living accommodation is badly needed,” says Stephen.
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