NR Times speaks with SNP MP, Lisa Cameron, about her background as a clinical psychologist and how long-term issues related to brain injuries are often overlooked.
Lisa Cameron’s attention is on countless important issues in her role as SNP MP for East Kilbride, Strathaven and Lesmahagow in Scotland, but she tells NR Times why she is particularly interested in policies relating to brain injuries. Before becoming an MP, she previously worked as a consultant clinical psychologist and is chair of the All-Party Parliamentary Group on Disability.
“When I was working as a psychologist, I was undertaking assessments of people with brain injury in relation to memory, executive function and language,” she tells NR Times.
“I’d routinely do assessments in practice, working with people on the front-line with brain injuries.”
Cameron also has second-hand experience, as her husband acquired a brain injury when he was serving in the Armed Forces. Thankfully, he received fast rehab, but the experience only highlighted to Cameron the importance of rehab and ongoing support for brain injury patients.
“I became aware from a personal point of view that these issues are often overlooked,” she says.
“Although someone might have treatment initially, often there are long-term consequences that go unnoticed, or support isn’t there over the long term and I feel it should be, particularly for veterans.”
Cameron often hears about the same pattern unfolding among her constituents, as well as problems accessing financial state support.
She has previously raised the issue of ‘inadequate’ personal independent payments (PIP) and employment and support allowance (ESA) assessments for people with brain injuries in the House of Commons.
“Someone with a physical disability has assessments with the Department for Work and Pensions to be assessed for financial support, where there’s often an underlying brain injury that may be historic on their medical records.
“But assessors don’t realise or understand that their functioning may not return to pre-morbid levels, and that there will be a residual impact on the person’s memory, potentially their language, their ability to plan and their executive functioning, and often these things aren’t picked up with benefits assessments.”
Unless someone has a really traumatic brain injury, Cameron says, they’re often not tested, despite the fact that much less severe brain injuries can often still have a massive impact on someone.
The coronavirus pandemic is exacerbating these issues, says Cameron, who is seeing diagnosis and assessments being delayed even more than usual in her constituency.
“That’s having an impact on constituents in terms of the support they have, and their access to appropriate welfare support,” she says.
Cameron has seen that, unless someone is admitted to hospital at the time of their brain injury, and undergoes extensive testing, there can be years of delay before the person is referred for assessments.
In Cameron’s constituency, there has been such a delay that a specialist service has been running outside of the NHS to alleviate pressure on the NHS for a number of years. She sees the positive and negative impacts this is having on the community.
“It’s preferable if services are conducted within the NHS, but the practicalities of things being the way they are currently mean that’s not happened, the NHS isn’t really able to manage this within the timeframe.
“For people who have been able to access it, it’s had positive benefits for them in terms of getting diagnoses, but the specialist service creates barriers where people can’t afford it, which creates inequality in the system.”
However, the service does get some referrals from the NHS to reduce patients’ waiting times.
“It’s good if people can access it from all backgrounds and it doesn’t undermine services the NHS is providing,” she says.
Away from her constituency and in Westminster, Cameron has found that, in her role as chair of the All-Party Parliamentary Group on Disability, there’s also a lack of understanding of brain injuries.
“People get confused between brain injuries and developmental disorders, spectrum disorders and mental health issues in parliament,” she says.
But Cameron has found this isn’t unique to parliament.
“When I worked in the prison service and going in to do assessments on people, there was a lot of underlying brain injuries that were unassessed. They were demonstrated in terms of impulsivity, lack of planning and poor executive functioning.
“This is a huge issue that needs to be addressed within criminal justice.”
Cameron says there should be basic training for prison officers around spotting brain injuries, and routine testing and assessments for brain injury when people are placed on remand.
When Cameron visited prisoners, she’d hear about prisoners who’d had three or four brain injuries, but no one linked it to difficulties they were having until she asked about their memory or executive functioning.
“Awareness training for prison officers and police officers would be helpful, and assessments for people on remand or in the system already, to ensure they get adequate support and any particular issues linked to their medical condition can be flagged up. This would definitely help recidivism rates.”
The stroke survivor turned rehab provider
When Mark Fricker suffered a stroke aged just 32, the lack of access to dedicated rehabilitation inspired him to retrain as a stroke rehab specialist. Here, he shares his inspirational story
Mark Fricker is very matter-of-fact about the impact of his stroke.
“I view it as a positive moment in my life,” he says.
“I now help people walk again, which is very rewarding, and I feel I have been given this chance in life to help others.”
Back in 2002, when Mark suffered a devastating stroke while on holiday, the outlook seemed bleak. With nowhere near the access to specialist rehab Mark knew he needed, he resolved to do it himself.
Eighteen years later, Mark is now helping others who are in his very position back in 2002, showing them how possible it is to rebuild your life and achieve your aspirations.
Having gone back to university to retrain, he has become an ARNI stroke rehabilitation specialist, supporting scores of people each year to rediscover new possibilities in their recoveries.
As the founder of Destination Fit, a studio in Weybridge, Surrey, Mark supports stroke survivors, alongside people with neurological conditions including Parkinson’s and Multiple Sclerosis, on their journey to recovery. He has also established Mark Fricker Neuro Rehab, which extends that specialist support into at-home rehabilitation.
“With limited NHS aftercare or resources once a stroke survivor has left hospital, I wanted to offer help to people who were in the same position that I was and to show them with hard work, determination and a commitment to succeed they can progress towards regaining some or all of their lives back,” says Mark.
Mark’s dedication to supporting stroke survivors came from his own experience of recovery, which saw him suffer a major stroke while on a motorbike holiday on July 1, 2002. He was only 32 with an eight-year-old son.
“I was with a group of friends on holiday riding our motorcycles back from Germany when I collapsed and passed out,” he recalls.
“I crashed into a friend in front of me and we both fell off at high speed. I don’t remember this, in fact, I don’t have any memory for around six months prior to the stroke.
“I remember waking in a small Belgium hospital with a broken right arm and dislocated shoulder and not being able to move my entire left side of my body, I had blurred vision and could hardly talk.
“I was then flown back to the UK and it was only then that we discovered I had had a haemorrhage on the brain.
“I spent six weeks in a stroke unit in London before being discharged, still paralysed and unable to walk or use my hands and arms.”
Mark’s realisation that access to specialist rehab was not readily available was devastating, but also inspiring.
“The aftercare for stroke survivors then, as it still is now, was a 30-minute physio session once a week for six weeks,” he says.
“I attended one of these sessions for the first week, realised that it would be nowhere near enough rehabilitation to get me walking again, and decided I would research stroke rehab and do it myself.
“I set myself a long term goal of completing an ironman triathlon within five years. I knew I had a long road ahead of me as I couldn’t even stand unaided but was determined I wouldn’t stay in a wheelchair at the age of 32.”
Mark set aside six hours each day for his rehabilitation exercises, and refused to be deterred by the fact he could not move his left side.
“The first time I was able to pick up a marble was when I knew I would overcome my disability,” remembers Mark.
“I cried with joy and that one action motivated me more than anything else.
“I spent the next two years working on my rehabilitation. I could eventually walk with a stick, hold a knife and fork and drink from a cup.”
Mark’s hard-earned recovery then made him realise the desire to help others who faced a similar long and difficult journey ahead.
“I decided to retrain and went back to university to study sports science and in 2007, five years after my stroke, I completed an ironman triathlon,” he says.
“I also passed the level three personal training qualifications and set up Destination Fit in 2011 to help others become active and healthy. I became an ARNI stroke rehabilitation specialist and am trained in Parkinson’s and MS conditions.
“I wanted to give people hope and to prove to them that with determination and support they can achieve their own personal goals”.
In the nine years since Destination Fit has been operating, Mark and his team have helped people of all ages and with a variety of conditions, improving their lives and, importantly, vastly increasing their belief in their own ability.
One client, Issy, suffered a stroke aged only nine and whilst at school. She was left completely paralysed on her right side and with some cognitive issues. Her parents were told she would never walk again, or have the use of her right arm.
She has attended Destination Fit twice a week for 18 months, and her sessions have enabled her to dance, run and rediscover many activities which previously seemed impossible.
Another client, Doug, is 71 years old, and suffered a stroke 15 years ago. He has been working with Mark for two years now, initially to improve his walking. As a result, he was able to walk around his local garden centre – an unthinkable accomplishment prior to his rehabilitation work.
“Having been through this gruelling experience of recovery myself, I am committed to giving people hope and belief they will get through it and can achieve their goals. That is what we are doing with so many clients, who are achieving fantastic results, and what we will continue to support people to do,” adds Mark.
Video: Watch the latest edition of the Curious Case Manager
Episode six of the Curious Case Manager features Fifth Sense, a charity for people affected by smell and taste disorders.
In this episode Vicki Gilman talks to Duncan Boak, founder of Fifth Sense and Nina Hill, director of development and operations.
They discuss Duncan’s own experience of loss of smell after he suffered from a traumatic brain injury, and how this led him to establish the charity.
Duncan and Nina explain the history and development of the charity and explain how they support individuals with smell and taste disorders through providing information, advice and access to a network of specialist clinicians.
Other topics include the causes of smell and taste disorders, smell training, smell memory and practical strategies to improve the quality of life of sufferers.
‘Lockdown inspired me to run a marathon’
Having suffered a brain injury which left her struggling to rebuild her life, Helen Whiteley found salvation in running. Here, she tells how she went from running for the first time to completing the Virtual London Marathon in only eight months.
“On November 24, it will be eight years since I suffered a traumatic brain injury (TBI) from a fall at home. I was found unresponsive at the bottom of my staircase at home by my husband Simon; I have no recollection of how I got there.
“I was initially taken to Huddersfield Hospital but once I was stabilised I was transferred to the Leeds General Infirmary neurosurgery department. It was here I was diagnosed with an acute subdural hematoma and fractured skull and was taken immediately into surgery for an emergency craniotomy to evacuate the hematoma. I was then placed in an induced coma on the neurosurgery ICU ward, where I stayed for a number of weeks.
This period was extremely traumatic for my family, especially my daughter Isobelle and son Isaac, who were only 13 and 9 at the time. My family were told that is was unclear as to whether I would regain consciousness once the drugs were withdrawn, and if I did, what permanent physical and mental disabilities I could be faced with for the rest of my life.
Fortunately, I did recover, albeit very slowly, although the brain injury has changed my life and who I am.
Following my accident, I suffered acute anxiety and was unable to leave the house and struggled with my balance needing a stick to help me walk. When I eventually was able to go out, I needed to be accompanied at all times. The simplest things were a struggle due to my lack of self-confidence and awareness of situations; I was taken out regularly by my physio to ensure I was able to cross a road safely.
I found it difficult to interact and communicate with people and was unable to cope in busy or new surroundings. I had, and still have, a very poor memory, struggle with cognitive functions and have lost my sense of smell and have a reduced taste.
I needed coping strategies like lists to ensure simple daily tasks like cleaning my teeth were completed. In February 2014, I suffered a seizure and have been diagnosed with epilepsy which is now controlled by medication.
I know I am not the same person I was before. I have no filter, speak my mind and can be immature, much to the horror of my children. These are all consequences from my brain injury.
Furthermore, I no longer work full time as an accountant for the NHS, as I had to retire due to ill heath, but I now work part time in a library which I do really enjoy.
I have been on a long challenging journey to get to where I am today but I have had the support of my family, my parents, occupational therapy, physiotherapy and the independent living teams.
Running came into the equation in January 2020, when my friend Gill signed me up for the Couch to 5K beginners running program with my local Northowram Pumas Running Club. I found the prospect of taking part in this extremely scary, very challenging and somewhat out of my comfort zone, having never run before.
At the first session I nearly went straight home but the support from the club run leaders was amazing. I progressed slowly on the programme, first running one minute then walking one minute, and slowly increasing this. On March 7, I did my first 5K park run with the Pumas. I was overjoyed that I had achieved this but then lockdown happened and everything changed.
During lockdown, I continued with my running. Through challenges set by our C25K run leader I felt confident to go out and run on my own and eventually I tried running off-road. The running club have been fantastic during lockdown, setting challenges for us to do and I set myself mini challenges, slowly progressing to run 5 miles, 10K, 10 miles, and 2 half marathons.
I had never taken a selfie before I started running, but as I made progress the pictures began to get posted on the running clubs social media. I have totally embraced the running bug and I am amazed by how far I have come in such a short period of time.
Prior to January of this year, I had never run or even thought I could after walking with a stick for the majority of my recovery to help with my balance issues. Running has helped in my recovery by increasing the confidence I have in myself and making me more independent, as well as introducing me to a new social group.
In hindsight, if it hadn’t been for lockdown, I wouldn’t have continued to run as I have. I would have been unsure of running with groups of different people and would have felt pressured. Lockdown enabled me to build up my running at my own pace with virtual support from the Pumas.
I decided to take on a new challenge and registered to take part in the Virtual London Marathon on October 4, running alongside Gill and Nic from the Pumas and following a route mapped by the running club, finishing in my hometown of Halifax at the historic Piece Hall.
This would be just a month before my 50th birthday, and nearly eight years since my life changing accident – as well as being only 8 months since I put on my first pair of trainers!
I only had one month of proper training prior to the marathon and the furthest I had run to that point was 18 miles, but I was determined to complete it. I committed to raising funds for Headway, as well as for the neurosurgery department at Leeds General Infirmary who cared for me after my accident.
I wanted to give something back, which hopefully in a small way will help support patients and their families at this critical time and to say thank you to the brilliant consultants and nurses who saved my life.
On race day, we set off from the Wraggles in Queensbury at about 8.40am. We had so much support during the run. Cars beeped and total strangers clapped and cheered us on. I was so emotional and absolutely amazed that I’d done it and finished it in 05:37:45.
I know how very lucky I have been to recover from my injuries with only minor disabilities, but there are many people who are not as fortunate as I have been in my recovery. What I am doing is for them.”
To support Helen in her fundraising for Headway and the Leeds General Infirmary neurosurgery department, visit https://www.justgiving.com/crowdfunding/helenwhiteley
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