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A journey of recovery after COVID, a stroke and Long COVID

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Following the life-threatening experiences of contracting COVID-19, having a stroke and then living with Long COVID, James is being supported in rebuilding his life by the QEF Care and Rehabilitation Centre. Here, he shares his story

 

“On Christmas Eve I felt bad, I passed out and they called an ambulance out. They took me into East Surrey hospital, checked my sats, gave me oxygen and when my sats improved I went back home.

But the next day it happened again, I passed out and they took me to A&E, then a respiratory ward. I didn’t make any improvement, so a bed was prepared for me on ICU, where they put me on a ventilator that saved my life. I remained in ICU at East Surrey Hospital for a further two weeks until I was stable enough to be moved. During this time, it was uncertain if I would survive.

I was airlifted to the Lane Fox Unit at St Thomas’ Hospital In London, in the same ward where Boris Johnson the Prime Minister was treated. I stayed on a ventilator there for four weeks.

When I finally came round, I was completely paralysed and I’d lost sight in my left eye. Apparently, I’d had a mild stroke whilst I was on the ventilator and all I could move was my head – I couldn’t even swallow on my own.

Whilst I had my tubes in my neck on a ventilator, my kidneys started failing so I was on dialysis as well, so it was a fun time.  I was in there for two months while they stabilised me and saved my life and then I went back to East Surrey hospital.

In total I have now been in hospital for six months.

The head physio at East Surrey hospital recommend that I come to QEF as this would be the best place for my neuro rehabilitation needs.  I’ve been at QEF for about 10 weeks now. The physiotherapy is unbelievable – they’ve done a marvellous job and have got me virtually walking again – I know I’m aided by sticks, but they’ve got my limbs and my arms working.

When I came here all I could do was feed myself – just. I couldn’t move my legs, I had to be hoisted into bed, hoisted into the shower, hoisted everywhere – I couldn’t even roll over on my side.

For four months of my time in hospital I laid flat on my back not being able to do anything. It was a place I didn’t want to be anymore. But when I got here after a few weeks I started to see slight improvements and my mind focused on just looking towards the future.

Every time I did physio I saw a change and they saw a big change as well. It’s a brilliant facility here, it really is. I can use both my legs now. I can stand up and walk with crutches and walk with a frame. I’ve got strength in my arms but they make me put most of my weight through my legs.

Long COVID has given me a lot of fatigue, when they work me hard at physio I really do feel tired and all I want to do is come back to bed and sleep.

I’ve also lost a lot of my voice after the pipes have been down there for so long and the tracheotomy pipe in my throat. My sight in my left eye has come back about 50 per cent – I had a big ulcer in my eye from when I was on a ventilator. You have terrible hallucinations when you’re on a ventilator – recovering in hospital and not being able to move was the worst thing ever.

I’d had both my jabs now but obviously too late. My wife works in the NHS in East Surrey and bought COVID home. My sons both got it too as they were visiting at the time, but they just had cold symptoms for a day or so and I nearly popped my clogs! It was a mad journey and I wouldn’t wish anyone to go through it.

I’m doing a lot of physio here and some occupational therapy, such as cooking for myself, but mainly physiotherapy and this last couple of weeks it’s been intense. The care here has been terrific – the nurses and the carers have been absolutely brilliant.”

To find out more about QEF’s Care and Rehabilitation Centre email neurorehab@qef.org.uk or visit qef.org.uk/CRC_professionals 

Brain injury

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

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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. 

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Brain injury

Helping Andy look to the future after TBI

How Richardson Care is supporting him in his ongoing recovery and rediscovery of independence following brain injury

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Here, we look at the story of Andy, who is working towards independent living following a traumatic brain injury (TBI).

Through a combination of his own dedication and commitment, and the holistic person-centred care provided by Richardson Care, we look at the significant progress he continues to make

Andy’s Story

Andy grew up an independent young man, a music lover from a musical family and a keen drummer.

Having qualified as a fitness instructor, he was actively searching for a vocation. Unable to find work in fitness, he tried jobs in the financial industry, the prison service (for which his parents say “he was too soft hearted”) and occasionally as a roadie for a friend’s band.

He eventually found that he really enjoyed the hard, physical labour and outdoor environment of the building trade. He impressed the construction firm he had begun temping for so much that they offered him a permanent position and a trade apprenticeship. 

Tragically, in 2011, at the age of 24, Andy suffered a traumatic brain injury as a result of a fall from a harbour wall. 

After his injury, Andy received treatment in various hospitals and made a significant physical recovery. He spent the following years in a number of mental health facilities and care homes until he was admitted in 2020 to Richardson Care. It was evident that his mental and psychological progress had not been as much of a success as his physical recovery. 

‘Hard to handle’

On arrival at Richardson Care, Andy was already taking prescribed PRN medications and was said to be ‘hard to handle’ without them.

His parents were shocked at this. They noticed that his speech was slurred and that it was often difficult to connect with him. He could, at times appear quite drowsy and vacant. 

His mood was often low and his ability to manage his emotions would fluctuate, particularly when he became frustrated. He was quite withdrawn and would only occasionally take part in social events or group activities. He also needed encouragement and prompting to carry out daily tasks. 

Progress

Less than two years later, Andy is enjoying life at The Richardson Mews in Northampton. His mood is generally much more positive and confident. He is now better able to reflect on his anxieties and frustrations, developing clear ways in which he can counteract these feelings.

He has a paid role at Richardson Care helping to maintain the grounds of the home. This has included planting new flower beds, helping to clean down the paths, etc. This has improved his self-confidence and works well to counteract his belief that he is ‘worthless’.

Andy is paid weekly, and at present requests to save this money each week. This in itself is an insight into Andy’s progress. 

‘Much more settled’

Another important aspect of Andy’s journey has been the transition from a more pharmacological-based approach to one that is balanced with psychological therapy and other enrichment activities.

Andy’s parents, who are regularly in touch with him throughout the week, have noticed the difference: “He is much more settled, with his low moods few and far between…even when he is unsettled, it is much quicker to talk him around.”

He is now no longer withdrawn or vacant but keen to engage with staff and residents around the home, and is always polite and friendly in his interactions. 

Andy enthusiastically engages in the activities available to him at Richardson Care, such as enjoying music, playing the drums, going to the gym and swimming, which have been a stable comfort to him in his rehabilitation. 

“I also do cooking and cleaning which makes me feel good as I feel like I’m doing stuff, rather than sitting around and doing nothing,” he says. Andy independently carries out these tasks and only requires minor prompts which he follows with ease.

As his parents report: “He says he loves it there, so it can’t get better than that.” 

Independence

During his time at Richardson Care, Andy remains conscious of his goal of independence.

This appears to drive him in his rehabilitation and recovery journey and his progress is apparent. He fully engages with his goal setting sessions and he has made good progress in his daily living skills. He is an independent man and this is reflected in the level of commitment he gives to each task he is set.

Key to his success is Andy’s own commitment and involvement in expressing preferences, setting goals and making decisions when it comes to the therapies offered to him.

Andy, through his own determination combined with consistent care and therapy tailored to his unique personal physical, emotional and psychological needs, is now living a life that is improving all the time. 

Person-centred care

At Richardson Care, service users benefit from the support and guidance of a multi-disciplinary team as well as 24/7 care staff, all of whom adopt an individualised and person-centred approach to support those with acquired brain injury.

Andy receives assessments that inform his care plans and ongoing intervention guidance. These are reviewed frequently to ensure that his progress is always at the forefront of every decision and activity. 

As Andy’s parents say: “The consistent management and staff have helped [Andy’s progress], previous placements haven’t been so stable. At Richardson Care they focus on the service users and provide the attention and care.”

The therapeutic interventions currently on offer to Andy based on his needs and his preferences are:

Psychology input allowing him to engage, both one-to-one and in a group setting. These sessions are aimed at improving Andy’s cognitive skills and mental wellbeing. They support him with coping skills to use when he is feeling low or frustrated as well as providing a safe space for him to discuss any worries or issues.

“I enjoy my sessions with psychology, we talk about how I’m getting on and it makes me feel good to do that.”

CBT-based psychoeducation supports Andy to identify the progress he has made and the good and productive things he has done recently. This improves his insight into his own emotional state and how to manage it.

This is reflected in his ability to seek staff support when necessary and continues to aid the development of his confidence, self-esteem and emotional resilience.

“I feel like I can trust staff and talk to them when I need to.”

Goal setting – with support, Andy has set goals around increasing his independence. This intervention aims to empower him to reflect on his progress and realise his potential.

Consistent support from the care team has encouraged Andy to develop and maintain a good therapeutic rapport with those around him that has helped him to manage both his behaviour and environment.

A Positive Behavioural Support (PBS) approach is taken with all service users at Richardson Care. This involves care plans, risk assessments and intervention guidance created in collaboration with Andy to recognise and reinforce positive and adaptive behaviour, thus increasing independence.

“[I was] going nowhere before here, as I had recently had my brain injury. I feel like by doing the things here I have a purpose.”

Rehacom® – a computer-based cognitive rehabilitation program which includes a range of modules that focus on re-training cognitive functions.

This program reflects Richardson Care’s values of individualised care as the software self-adapts the difficulty of the tasks to the client’s needs. Therefore, tasks encourage development by providing challenges that are just right for the client.

Andy enjoys engaging in these sessions as they are presented in a fun, game like, format. He requires small prompts at times to refocus but overall “finds it interesting”. After only a few months, results show slight improvements in modules such as ‘memory for words’.

Andy’s story shows the complex psychological effects of acquired brain injury, which are unique to each individual. With the support of dedicated care staff and a holistic care plan to meet his needs, Andy is a much happier person and making good progress.

As Andy’s parents say: “We hope it long continues.”

*We have changed the individual’s name to protect his anonymity.

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Brain injury

P.A.U.L For Brain Recovery – ‘We know it’s difficult, that’s why we exist’

Paul Spence tells NR Times how his own brain injury has led to the creation of new support for fellow survivors

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An organisation established in response to the lack of community-based brain injury support is now helping to change the reality for survivors across East Yorkshire and Lincolnshire. 

P.A.U.L For Brain Recovery has helped hundreds of people living with brain injury since its inception in 2016 and has created a dedicated centre in Hull to offer support to individuals and their families as they seek to rebuild their lives after the devastation of brain injury. 

The charity was formed by Paul Spence, who sustained a brain haemorrhage in 2012 in an unprovoked attack, leaving him struggling to cope with the new reality he faced. Having been forced to give up his career and deal with the breakdown of his relationship, Paul’s situation was amplified by the lack of community support post-discharge from hospital. 

But through discussing his experiences via social media, connecting him to other brain injury survivors, Paul realised the impact he could make on so many lives by leading the way and filling the void in community support – and through the creation of P.A.U.L For Brain Recovery (which stands for Positivity, Awareness, Understanding, Love) he and his growing team are delivering life-changing impacts to people in Hull and beyond. 

The growing charity routinely works with people as far afield as Lincolnshire, who travel to its base in Hull’s Wilberforce Centre for access to its many sessions, delivered on both a group and one-to-one basis, which range from health and wellbeing, education, social groups, peer and family support and advocacy. 

A youth group has also been created, alongside a ‘Heroes Group’ who share experiences and help determine the future direction of the organisation. 

P.A.U.L For Brain Recovery – which has secured funding from NHS Hull CCG in recognition of its role in community brain injury support – also arranges social outings and allotment sessions for its group.  

And for founder Paul, he is proud of the difference the organisation continues to make to the lives of people like him and his family, who left the outstanding medical care of Hull Royal Infirmary to be discharged to minimal support in the community. 

“There was no training or support. I was in a bubble and my family were looking after me, it was very difficult for them trying to muddle through. We very quickly realised there were very limited services in the community, not adequate services for the support brain injury recovery needs,” he says. 

“I couldn’t explain how I was or how I felt because I didn’t know. I was like one of those people you see in the movies who sits there staring into space. All I knew was that my life was different and difficult. 

“It has taken me years to make sense of it. But then when the insight does improve, that’s when the depression comes because you realise what your life actually is now and it pulls you down. 

“My relationship broke down, my social circles faltered, and you certainly find out who your friends are during times like that. People were having to grieve for the old Paul because he wasn’t coming back, and that was incredibly tormenting and frustrating for my family. 

“I had worked as an electrician since I was 16 and I had a good job as a foreman, and to be told it’s likely I would be able to continue in that career was very difficult and really frightening. I did go back to work but had gone from being the strongest link to the weakest link. The lads had my back and tried to help me, but I had to admit that jobs I once could’ve done with my eyes shut, I couldn’t do at all anymore. It was a daily reminder of what had happened to me. 

“All your life you work on building your identity and then suddenly that is stripped away. You become very vulnerable, and life becomes incredibly tough. I’m privileged to have amazing family and friends, but they don’t know how to help you and there’s little to no support there to help any of you.”

Determined not to let his injury beat or define him, Paul turned to exercise as a therapy, initially running a half marathon to raise money for Hull Royal Infirmary, which raised over £17,000, with thousands of pounds in further funds raised since. 

Wellbeing became a significant factor in Paul’s ongoing recovery – his story even being documented in Men’s Health magazine – with him realising the positive impact exercise, eating well and spending time outdoors were having on his life. 

“Training gave me a purpose, I was giving something back to Hull Royal Infirmary but also enriching my own recovery, my brain function relies very heavily on looking after myself,” he recalls. 

“It gave me discipline and helped me to realise a lot of things. I would go to the gym and at first just wandered around sitting on the machines, but I realised I was different so pushed myself to get past that.

“It also made me think about my health in general, which included my mental health, and looking back it was a mistake to not open up about my mental health earlier. I had a lot of time on my hands, which I actually needed, because that time alone gave me time to process and accept what had happened. 

“I now understood what happened in the early days of my recovery a lot better, and the reasons I struggled. I also realised there must be more people like me, and I wanted to help make a difference to them too – until I understood myself, I couldn’t work with other people, but I had reached that point.”

From sharing his journey and thoughts on Facebook, Paul found growing numbers of people coming to him for advice, requesting his support in-person, with Hull Royal Infirmary also asking him to come in and speak to patients and families. He also did a number of talks in local schools to highlight the devastating effects that One Punch can have. 

“I wanted to raise awareness of ABI anywhere and everywhere, in any way I could. I had been to the NHS Hull CCG and said I didn’t think the support on offer was enough and told them about the service I was providing myself. They told me to put a business plan together and come back, which was the start of all of this,” says Paul. 

With the support of key contacts he had made, all impressed by the tireless work Paul had done in promoting brain injury recovery, Paul put together the business plan and secured funding from the NHS Hull CCG for a dedicated space in the Wilberforce Health Centre. 

Since 2016, P.A.U.L For Brain Recovery has built a five-strong team, delivering support to people and families whenever they need it. 

Leigh North joined as business lead five years ago and has worked alongside Paul in building the charity’s services and reach. 

“Our approach is very much about making the pathway from acute to community care as smooth as possible and to support people in that, helping them to avoid falling into crisis,” he says.

“In some respects, this was initially a research project, which over the past five years has enabled us to develop focused, person-centred support plans to optimise recovery and minimise the long-term effects of brain injury.

“Our overall aim is to help make life easier after brain injury and help survivors reach their new potential. We offer practical coping skills and knowledge to help them accept and manage their life-changing disability and provide healthy activities to improve emotional and physical wellbeing, so they can go on to rebuild a meaningful life.”

And for Paul, he is proud of what has been created, and of the difference the charity is making to so many lives. 

“What we do is based on the lived experience of people who understand. We know what it’s like and we know it’s difficult, and that’s why we exist,” he says. 

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