Specialist neurological care provider Sue Ryder is looking to increase its community support in the South East of England to add valuable new provision in the area amidst unprecedented demand for resources.
The charity said it is currently carrying out scoping work into what additional support it can provide, both in terms of rehabilitation and supported living.
Sue Ryder operates two neurological care centres in the area – Stagenhoe in Hertfordshire and The Chantry in Suffolk – and continues to grow its offering to inpatients, with The Chantry doubling the size of its Level 2 neurorehabilitation unit since its opening in January 2019.
It has also recently launched a pilot Parkinson’s helpline service for people living with their condition, families and healthcare professionals across the Suffolk region, to build on the success of its established Dementia Together service.
Now, Sue Ryder is turning its attention to ways it can continue to increase support for people living with neurological conditions in the community, at a time when existing resources are under huge pressure following the COVID-19 pandemic and growing NHS waiting lists.
“We’re always looking to support more people through our community services, to be there when it matters,” says Sally Davies, regional neurological director at Sue Ryder.
“We’re currently scoping out what we can do across both Suffolk and Hertfordshire as there is demand across both areas, we’re casting quite a wide net and are looking at what we can do.
“We are looking at rehabilitation as well as supported living, there are a plethora of different angles to look at as we want to make sure what we provide responds to the demand, which is incredibly high.
“We have a supported living bungalow in Suffolk, where we can support people who don’t have a high level of clinical need and don’t need to be in a neurological centre, so we are doing scoping work to see what we can do.
“I don’t think we can ever fully meet the demand out there, sadly, but we are always looking to increase provision where we can.”
The addition of the Parkinson’s helpline in March at The Chantry has also helped to give support to people living in the community with the neurological condition.
“It is a fantastic pilot, we’re nine months in with three left, and we’re there for people at any stage, right from those who have not yet been diagnosed but need information,” says Sally.
“We have a dedicated team member working on this and we’re reaching lots of people. We’re interacting with people however they like – email, video, telephone, whatever suits them best.”
Its use of virtual communication has increased significantly during lockdown, enabling residents, families, carers and healthcare professionals to maintain contact despite the restrictions.
“During COVID, it was very difficult to offer short-term places with the restrictions in place, so we were able to offer virtual support by Zoom calls. We could offer guidance and peer support, we held our dementia group virtually too, and it also enables our clinical consultants to carry out virtual assessments.
“To ensure everyone could be part of this, we taught a lot of our residents, families and carers in using a laptop or tablet. It has been quite difficult for some people, particularly those who didn’t grow up with a computer or technology, but it’s been valuable.”
And while some ways of operation have had to change due to the pandemic, Sally credits the team at Stagenhoe and The Chantry as being central to the charity being able to continue its support for so many people.
“Our staff in both services have been phenomenal, they’ve supported each other while supporting our residents and I’m incredibly proud of the job they’ve done. We’re nothing without our staff and they are, and continue to be, outstanding,” adds Sally.
A silent epidemic: traumatic brain injury in the community
Professor Nick Alderman, clinical director at Elysium Healthcare, looks at neurobehavioural support
In the UK there are an estimated 1.3 million individuals enduring the long-term effects of traumatic brain injury (TBI) living within the community. Often, symptoms of neurobehavioural disability, a legacy of TBI, can go undiagnosed and unsupported, inhibiting how successfully they can live within the community and putting a huge strain on their relationships and family life.
Professor Nick Alderman is clinical director, neurobehavioural rehabilitation services and head of psychology at Elysium Neurological Services. He is acknowledged internationally as one of the foremost experts in neurobehavioural rehabilitation, having more than three decades experience in this field. In June 2021, Professor Alderman, and his research colleagues at Swansea University, published a study which looked at the prevalence and predictors of neurobehavioural disability amongst survivors with TBI in the community.
In this EveryExpert article, we talk with Professor Alderman – also part of NR Times’ expert panel – about how the Swansea Neurobehavioural Outcome Scale (SASNOS) can be used in a community setting and the necessity to raise awareness about the silent epidemic of TBI survivors across the UK.
Hi Nick, thanks for talking with us today. Could you start by explaining more about how the lives of individuals, who are enduring the long-term effects of TBI, are impacted in a community setting?
Nick: “Neurobehavioural disabilities can be very complex. There is a large range of symptoms that are due to a variety of factors that people can inherit as a result of a traumatic brain injury. For example, there’s the organic damage to the brain itself. When the damage is to the frontal part of the brain this can have a significant impact on a person’s life within the community, because this is the part of the brain that’s responsible for controlling behaviour and picking up feedback. A function of the frontal lobe is also to enable us to adapt our behaviour to new and novel situations.
“So, when people have frontal lobe damage as a result of a TBI, not only are they more likely to have challenging behaviour, they can often have real difficulties in coping with novel situations. This produces a sort of dilemma as in situations, like a formal conversation or structured exchange, where people are well rehearsed in the behaviour, because before injury the behaviour was just habitual, there are no obvious problems. The person can seem to be functioning ok. This is why individuals can perform well in formal assessments but outside of the assessment they actually struggle in many aspects of life.
“As soon as you put someone into a new or novel situation where they’ve got to think on their feet, you see problems with planning and organisation. This can easily result in frustration, and because they may also have difficulties inhibiting behaviour as another legacy of TBI, they may express this by shouting or being aggressive, which can be frightening and intimidating to other people.
“So that’s the organic damage, but of course there’s damage to function as well, particularly to cognitive function, memory, attention and planning skills.”
So neurobehavioural disabilities is about a lot more than just challenging behaviour or aggression?
Nick: “Yes, exactly. It’s about all different sorts of impact on people that have a very subtle, but in many cases, a very catastrophic effect on their day-to-day lives. One common example is that individuals can often have difficulties with the ability to attend to multiple events. For instance, let’s take myself as I’m speaking here now. I’m having to think about what I’m saying, what I’m about to say, I’m looking at you to see if you’re paying attention to gather some feedback. So I’m having to process lots of things at the same time and that has an impact on my behaviour.
“For individuals with brain injury, often their ability to monitor, in that sense, is much more restricted. So in social situations where an individual with TBI is engaging in conversation with another person, and somebody else joins that conversation, perhaps the conversation changes direction, the individual with TBI can struggle to respond appropriately.
“Somebody with these sorts of difficulties can’t pick up on the fact that the conversation has changed, because they’re so intent on monitoring their own output in terms of their verbal behaviour. As a consequence, their behaviour therefore becomes socially inappropriate because they’re not adjusting it to the new set of circumstances. It can often be labelled as rude or ignorant, when they’re not deliberately being so. The behaviour is a product of the cognitive problems they have.”
And these are considered quite basic social interactions – conversations, exchanges etc. So if an individual can’t manage this it can be quite limiting on what they’re able to do in everyday life.
Nick: “Absolutely, and this issue is often missed in formal assessments – because of the reasons explained earlier. People will think of things like aggression because that’s easy to conceptualise and much easier to measure. But when it comes to the social niceties it’s much more difficult to establish their impact.
“For clinicians working face to face with individuals with brain injuries, we have long been cognisant of these issues but there weren’t really any good instruments out there to measure neurobehavioural disability in the round. That’s why we developed the SASNOS and why it’s important from a rehabilitation point of view. We need global measures to give us this all round assessment, otherwise they’re biased. If clinicians are only measuring aggression, for example, they’re not measuring these other very subtle symptoms that are often the bigger problem.
“The other thing is, which led to the development of the SASNOS, was the fact that nearly all of the measures that were being used had been modified from psychiatry so they hadn’t been specifically developed for brain injury. There’s obviously an assumption on the part of people who think that the psychiatry of aggression is going to be the same as the psychiatry of brain injury, and they’re not. The drivers are completely different.”
So let’s talk about your recent paper, looking at the use of the SASNOS in the community. What was the reasoning behind the study?
Nick: “The main motivation was to try and illustrate the prevalence of neurobehavioural disability holistically, not just with aggression, but with the whole range of symptoms that individuals experience. The SASNOS has been used extensively in patient settings. We’ve successfully been able to compare the prevalence and severity of neurobehavioural disability for people in specialist neurobehavioral units such as the Avalon Centre.
“But, we know from the research, that most people who have these sorts of difficulties are out in the community and they don’t get access to the appropriate support. There are 1.3 million people, it is estimated, that are living in the community with the long-term effects of an acquired brain injury, including traumatic brain injury. The research shows that these difficulties are chronic, they don’t go away and they don’t tend to get better. They are more disabling in terms of community reintegration than physical disabilities. They are the reasons why marriages and families break up, why people have hit out at home and ended up in prison or on the streets, or in long term psychiatric care.
“So the motivation to look at the community group is very much from that point of view. In the paper we show that the difficulties weren’t as severe as you would find in patients who’d been admitted to specialist neurobehavioural programmes, because they’re a particular sample. But the difficulties were still quite severe, even for violence and aggression. Particularly with interpersonal relationship problems and problems with cognitive function.”
Was there anything particular about the community sample in your study?
Nick: “Well the main point to stress here is that these individuals looked for all intents and purposes like they are fully recovered. However TBI is a silent epidemic, individuals seem to be functioning normally and, if you look at someone, there doesn’t seem to be anything wrong with them. But actually the reality is very different.
“It’s only when people are put in situations where their ability to direct frustration gets tested, or they are put into a very unique situation and they don’t have the capacity to cope. They’ve lost the ability to plan and change behaviours. If they’re in novel or new situations their difficulties really come to the fore.”
Could we talk a little more about contextualizing and self-awareness i.e. the individual has an awareness that they have this disability or that they’ve been impacted in this way. Does this self-awareness help them to manage behaviour and responses?
Nick: “You’d think it would, but it doesn’t always. Some people are very insightful about what has happened but this can lead to an increase in depression because they are very aware that their situation has changed. Others have less awareness and insight. For example, if you ask relatives or someone that knows the individual well, and talk to them about their difficulties, there’s often a disconnect.
“Relatives can describe numerous difficulties and then we talk to the person with TBI and they might say “I don’t have any problems and I don’t know why I’m here today”. It can be a barrier for rehab because if people don’t recognise that they are experiencing difficulties, they won’t necessarily want to seek out rehabilitation.
“An advantage of the SASNOS is that it has two versions. One version that people that know the person with TBI can complete, and another version that the person themselves can complete. So clinicians and researchers can look at that paradox.”
If the individual who has TBI doesn’t have that insight into their situation, they’re not going to come forward for help, so do you have to rely on the families to come forward?
Nick: “Yes often we do, the families are usually the torch bearers or flag bearers for trying to get their relatives into a rehabilitation programme. Or it’s because their behaviour is such that they’ve got into trouble with the law, and may need residential neurobehavioural support.
“An individual can suffer a TBI and make a good physical recovery whilst they are in hospital, because they’re in an environment that’s structured and supported. They get to know the environment and can make progress. However when they get discharged, often without a follow up, they’re just left to get on with it and that’s where the difficulties begin to show.
“That’s why it’s quite unusual for us to see patients within months of injury, it’s usually years before the full social impact of the injury is felt. So this is why the SASNOS is important, it makes these hidden disabilities, that have such a catastrophic impact on daily life, apparent and visible which gives them substance. And it can be done much more quickly, hopefully reducing the negative impact on the individual and their family.”
Thanks for your time today Nick, as we conclude our conversation is there anything else you’d like to add?
Nick: “Well I’d just like to reiterate the importance of continuing to try and educate people and raise awareness of the issues for individuals with TBI who are living within the community. I often refer to the startling statistic that there are 1.3 million people living with TBI in the UK, many of whom are living without adequate support. As a silent epidemic, they are hidden from sight, until their difficulties become so great they need help from residential services.
“The figure of 1.3 million people just refers to TBI but if you add to that the number of people with other forms of acquired brain injury, that’s a sizable portion of the population. And if this article can contribute to that growing movement of raising awareness and education, that would be a very positive contribution.”
- For more about Elysium Neurological Services, visit here
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.
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