The progression of motor neurone disease can be cruelly fast.
The last thing families affected by it need, then, are delays in getting the vital support they are entitled to.
But in households across the UK, red tape and the stuttering mechanics of local councils are causing needless hold ups in essential home alterations. Ultimately, people with the disease are becoming trapped in unsuitable housing conditions, a new study has found.
A core problem highlighted in the report is the patchy nature of how Disabled Facilities Grants (DFGs) are delivered to people with MND.
DGFs enable various accessibility measures such as ramps, wider doorways, wet rooms – or any other change that makes home life possible as the disease’s influence on mobility grows.
It is means tested and available in England, Wales and Northern Ireland.
The findings suggest that many people with MND are struggling to access them at all, or at least within a reasonable time frame.
The end result is a litany of horror stories in which patients and loved ones are being let down by a system supposedly designed to help them.
One personal account in the Motor Neurone Disease (MND) Association’s report details how workers turned up to adapt doorways for a wheelchair on the day that the individual died – such had been the delays to the process.
Another respondent in the charity’s Act to Adapt report says: “We applied for financial aid but were turned down for any assistance as we both worked.
“We were told to reapply when our circumstances changed. As far as we were concerned they had already changed dramatically and we didn’t have time to wait! Joe’s work colleagues, family and friends began raising money to have our house adapted.
“As it turned out, it really was too late for Joe. Seven months after diagnosis Joe died. The whole process was shocking to me. I couldn’t believe that we were basically told we would have to do it ourselves.”
Among similarly bleak anecdotes, one family member notes: “The ramp and wheelchair came too late and because of length of time for grant for wet room we had to make do with a poor version that flooded every time we used it.”
Another says: “MND is a disease where you are always chasing your tail. One day you are ok … the next you have lost a personal faculty. Property adaptations for people [with] MND should be impressively proactive – more in expectation than reaction.”
Around 4,500 people in the UK have MND. Statistically, a third will die within 12 months of diagnosis and more than half within two years.
A speedy DFG outcome is clearly required against such time frames but, as Alex Massey, policy manager for the MND Association explains, it is not always achieved.
“The main issue our report brings out is the length of time it takes to access support for people who need to adapt their home. In many cases, the timelines are simply far too long.
“MND is a very rapidly progressing condition. When you have a situation where the application for a grant takes six months to process, that’s totally inappropriate.”
Costs keeping families trapped
The charity surveyed 850 people, including those living with MND, carers, health and social care professionals and the charity’s own volunteers.
Of the 387 respondents affected by MND as a patient, carer or loved one, 96 per cent cited the cost of adaptations as a major barrier to adapting their home.
A further 39 per cent blamed a lack of financial help for adaptations or house moves.
A fifth said the length of time it took to hear whether they were eligible for grants such as the DFG was a problem and 23 per cent pointed to a lack of support from local services.
Professionals were also asked what they felt were the biggest barriers people living with and affected by MND faced when securing accessible housing.
Of 92 respondents, 87 per cent highlighted the emotional burden of having to organise adaptations or move home.
The MND Association says its staff strongly agree with this, and it was a theme at its recent “engagement events”.
Eighty three per cent indicated that a lack of available accessible homes was a barrier, and three quarters chose the length of time waiting for an accessible home.
A creaking system
Massey also points to the use of an outdated means test which potentially leads to individuals being unfairly rejected for DFGs.
To qualify for a DFG, a person must demonstrate that the work is ‘necessary and appropriate’ to meet their needs, including moving around and getting in and out of their property, and that the work is ‘reasonable and practicable’.
There is also a ‘test of resources’, which is based on household income and savings.
Certain benefits, such as Employment and Support Allowance and Universal Credit, mean that a person will be passported through the means test.
Massey says: “The means tests look at income and assets, but what it doesn’t look at is the real cost of living and coping with a highly disabling progressive condition like MND.
“The cost of care and support, additional costs for things like energy and transport all add up, so people find they are hit with significant financial costs which can be difficult to manage.”
This was echoed in the report, with a consensus of people stating that the means test for DFGs is unfair, particularly in terms of both the low savings limit and the fact that it does not consider real outgoings, which can be substantial for someone with MND.
MND Costs – a separate MND Association study and campaign – found that the extra regular and enhanced costs of managing the disease equates to £9,645 per year, not including one-off costs for equipment and adaptations.
“A lack of flexibility, or realistic consideration of the loss of income working aged people with MND will often face, can also result in both delays and financial hardship” says MND Association in its latest report.
“Problems are also caused by the fact that the test of resources is based on household, rather than individual, income,” it continues.
Darren Buckley (pictured) is among those with MND that was turned down for a DFG, having been diagnosed in August 2018.
“When I applied for the DFG, a woman from the council came to see me at my home.
“The first thing she said which made me feel optimistic was that ‘we’ve got half a million pounds of funds available this tax year for adaptations’.
“I then went through all the questions she said it would take a couple of days to be fed into the computer and it would be a ‘yes’ or a ‘no’. I thought that sounded reasonable.
“Unfortunately I didn’t get the outcome until a week to 10 days later when I got a phone call – no written information – from the same officer.
“She said that the computer had basically said I was able to contribute £140,000 towards adaptations in the house so I was not entitled to a penny for major adaptations work.”
Darren immediately requested written confirmation of his DFG rejection to support his case for charitable funds.
“It took three weeks for them to reply with a written note to say my DFG was not successful. So that wasn’t a good start.”
Darren contacted local builders and architects and used his medical retirement pension fund to adapt his home – with some additional charitable support.
“I was lucky to have that, I know some people don’t. But then after I had been told I couldn’t have anything from the DFG, I was then informed I could have minor works done worth up to £1000 – for things like a stair rail or shower seat.
“I was hoping to get my wet room up to standard and asked whether they could fund a specialist toilet or a ceiling hoist for my future development.
“The OT was then told by their manager that there was no further funding from council. I heard nothing from my OT after that until recently when my bedroom was being completed I was asking about a hospital profile bed.
“I went back to the OT team and they told me my case was closed because I was no longer a priority.”
In the end, his GP stepped in and helped him to the secure the bed he needed without the council’s input.
“The only support I got from the council was before I applied for DFG when they put in a stair rail and shower-board when I was still able to walk. From an OT point of view with my local council, the word I would use is shocking.”
Overall, Darren found the DFG process frustrating at a time when he was adjusting to the realities of living with a terminal condition.
“The council came out for the DFG and said ‘oh great you’ve got a garage, it’ll be good for the future, you’ll be able to have ground floor living’. Then said, ‘no you can’t have anything’. That was a smack in the teeth but I thought I had to go through them because I pay my council tax and should go through them for my social needs.
“The community nurse said to me last week, ‘you shouldn’t be paying for all this’ but I’ve got no choice when I keep getting told that there’s no funding.”
The MND Association’s report shows that the average value of a DFG rose from just over £7,000 in 2009/10 to nearly £9,000 in 2016/17, reflecting increases in building costs.
There is considerable regional variation, however; in London, only a third cost less than £5,000, whereas in most other areas between a half and two thirds are under £5,000.
The average cost of the two most common adaptations is £5,000, for showers, and between £2,400 and £4,500 for stairlifts.
The impact of such changes can be priceless, however.
“I have had a week of using the facilities,” says Darren of his adaptations.
“It’s like a new lease of life. It has really made me feel like myself, I can do these things again.
“I’m able to live and dress independently. This morning it probably took me about 55 minutes to an hour to get ready, but I have done it myself, so I still feel good about it.”
On the importance of accessible housing, the report says: “Being trapped in inaccessible housing is linked to a range of negative impacts on physical and mental health, resulting from factors such as isolation and loneliness, lack of physical activity, disengagement from family and community, and unsafe environments contributing to accidents such as falls.
“For disabled people and people with health conditions, homes need to be built around their needs.”
The DFG scheme is 30 years old this year and has, of course, helped many people to tailor their homes to their needs.
But MND Association’s data suggests accessing it is something of a post code lottery. Responding to freedom of information requests, 26 English councils said they spent less than 50 per cent of their DFG budget in 2016/17, while 80 spent 100 per cent or even more.
The funding allocation process for councils is not transparent, says the report, so ascertaining reasons for these discrepancies has proven challenging.
The Act to Adapt report is now calling for a number of changes at local and national government levels in how the scheme is delivered – and more broadly – to improve swift access to suitable housing for people with MND.
Massey says: “We really want to encourage local authorities to build on some of the best practice that exists out there so that we start to see good practice spread more widely across the country.
“We would also like to see them all keeping an accessible housing register; because it’s not just about existing homes, but also about supporting people to find alternative accommodation.
“Also, it can be very difficult to simply know what options are out there in terms of which properties are accessible, which is not something you can usually find out from your local estate agent.
“Accessible housing is a fundamental right that needs to be respected and delivered.
“I think it’s pretty well accepted now that there are strong links between appropriate accessible housing and health and wellbeing outcomes.”
The recommendations in the report include the introduction of a fast-track process for adaptations under £5,000 to be implemented by all authorities responsible for DFGs.
The report also urges discretionary support in certain circumstances, for example for people with a terminal illness.
Sharing of good practice in terms of providing advice, support and information is also encouraged.
Now is the time to embrace better ways of working
By Merryn Dowson, assistant psychologist and part of the team behind rehab goal-setting platform Goal Manager
A stitch in time saves nine. Rome wasn’t built in a day. The best things take time.
We are all too aware that some of the most important parts of our lives have been crafted, carved and developed over months and years. Consider your education, for example: you may well have been to primary school, secondary school and then sixth form college. Perhaps you went on to do an undergraduate degree.
You may even have taken another leap and completed a Master’s degree or a Doctorate. This took years. You learned, revised, sat exams, sat resits, applied for places, got results, got rejected, got accepted, and made it here.
One thing is certain: compared to all of this expertise, someone who completed a two-hour online course on the same topic does not come close. We know that putting time and effort into something gives us better results than if we tried a quick approach.
We do not always lead by this example though. Despite the knowledge that great results are only achieved through hard work and perseverance, sometimes we decide just not to bother. Often, a room in our home might look cluttered, worn down and unloved and it could be made to look incredible.
The walls could be painted, clutter cleared, carpet cleaned, furniture patched up, curtains updated, but it is so much effort. We see the effort it would take and keep living with it. It does the job. It’s fine.
We heard this a lot when we began to develop our software. Goal Manager was designed from within a clinical neuropsychology service with young people with acquired brain injury, and we recognised how goal setting was becoming an intimidating concept within our service and our colleagues across the field.
To combat this, we developed an online goal-setting platform which streamlines the key processes of goal setting into one system and allows members of multi- disciplinary teams (MDTs) to collaborate on goal data remotely.
Crucially, it was designed to fill a hole. The more daunting goal setting became, the more it was shied away from, and the guidelines for goal setting that had emerged from the literature were falling to the wayside.
While we designed our platform to save time on completing all of the gold-standard processes of goal setting compared to doing them manually, we found that people had often not been completing them at all. It was all too complicated.
As a result, we recognise that adopting a software solution like Goal Manager can come with its own problems to solve. It requires relearning a lot of
what we know about a concept like goal setting, understanding properly how these key processes work and how they can be applied clinically to benefit clients.
It is only then that you can start to think of ways to make it more efficient. To help with this, our users are offered bespoke demonstrations, guided MDTs through meetings to help with the clinical application of the data, and training on assessments and goal attainment.
This takes time. Our users are often throwing out their previous guide and writing a new one. When surveyed, however, every single one who responded said that it was worth it.
This brings us back to where we started: the best things take time; Rome was not built in a day; a stitch in time saves nine. By taking time to develop an understanding of goal setting and being able to apply it to a software solution, users experience all of the benefits of best-practice goal setting outlined in the literature both for their clients and for their teams.
Clients are motivated, rehabilitation is meaningful, important areas to address are highlighted, MDTs are focussed, clinical practice is evidenced – the list continues. None of this would have been possible without the initial investment of time.
While simple enough to read, this is no doubt overwhelming to apply to your service or practice and, with this in mind, there are some key points to remember. The most significant is that there is no better time than now.
The world is slowly opening its eyes, sitting up in bed and having a good stretch after the darkness of the Covid-19 lockdown. It is not yet certain if we are going back to snooze or if we are leaping out of bed afresh.
What we do know, however, is that we are heading into a brand new day. Even for those of us who continued in practice throughout the pandemic, services have been slightly paused in one way or another, whether that be refraining from home visits or having fewer people in the office.
We are all very aware that we are heading into the “new normal” rather than our old ways. Use this time to bring new and innovative ways of working into your practice. You might completely change your filing system, consider how you approach your waiting lists, or change how you approach MDT meetings.
Whatever you have been wanting to do for you and your service for so long, now is that time.
Perhaps you decide that you are going to welcome change but not all at once. That works too! For users of Goal Manager, we often suggest that starting with one or two clients might feel more manageable than a whole caseload.
This can help get to grips with the new concepts and ways of working without feeling like everything is completely disrupted. This applies elsewhere too. If you are wary of integrating a system into your whole service, start with one corner of it, evaluate, take what you have learned and then look to apply it more widely.
Finally, remember that all time taken to improve and grow impacts more than just what you set out to do. When people lose weight, they rarely conclude
by saying they just lost weight: they often enthuse about how they feel more energised or move easier or feel more positive or experience less anxiety.
This applies to any time you invest in developing your clinical practice or your service.
While time spent learning how to use Goal Manager and establishing it within a caseload is designed to improve goal setting, that investment also leads to improved assessment processes, more effective meetings, improved digital literacy, increased patient involvement and so much more.
The potential is enormous. To motivate you to start the process, look at what you want to achieve and how that might trigger other improvements.
While the world is still trying to drag its head off the pillow to open up the lockdown curtains, look to invest in addressing those needs you have always been aware of but never felt like you could justify the time.
Walk around your “house” and look into each room: is this the best it can be or could I give it a lick of paint?
Is now the time to bring meaningful solutions into my practice? Maybe grab a tester pot and try a new shade on the walls. Sign up for a free trial. Plan to grow and improve. Start building Rome.
To invest in improving your goal setting, visit www.goalmanager.co.uk to register for a live demonstration, sign up for a free trial or request a bespoke tour through the platform and its features.
Researchers unlock key prognostic tool for brain injured patients
In 1974, leading neuroscientist Graham Teasdale co-created the Glasgow Coma Scale (GCS) while at the Institute of Neurological Sciences in Glasgow. This scale has since been used to assess coma and impaired consciousness in patients who have had a brain injury.
The scale is used to describe variations in a patient’s eye, motor, and verbal responses. Each feature is assigned numerical scores depending on the quality of the response, and total scores range from three, which is a deep coma, to 15, which is full consciousness.
The GCS is used in clinics all around the world by physicians, nurses, and emergency medical technicians; and is also applied more widely in other, more complex systems that are used in assessing acute brain damage.
However, all three features of the GCS can’t always be determined in patients. Most commonly, the verbal response can’t be tested, as it’s not possible to determine this response in patients with severe brain injury who are intubated.
When the verbal score cannot be measured, the GCS can still be used in routine assessment and communication about a patient’s condition.
“The GCS should be reported in its component parts, so there is still useful information in the motor and eye components, and the verbal score can simply be reported as not testable,” Paul Brenan, senior clinical lecturer in neurosurgery at the University of Edinburgh says.
“The missing verbal score is problematic, though ,when determining the GCS sum score (eyes + verbal + motor). The sum score is used in clinical prognostic tools, such as the GCS -pupils score, so until now, missing verbal data has prevented clinicians from using these tools.”
But now, Teasdale and Brennan, along with Gordon Murray at the University of Edinburgh, have created a tool to use to assess impaired consciousness when the verbal component of the GCS is missing.
The researchers first examined a database of GCS assessments, and found that the verbal component of GCS was missing in 12,000 patients with traumatic brain injury (TBI), which made up 11 per cent of GCS assessments. These verbal scores were most often missing in patients with low eye and motor scores.
Using GCS data recorded in a database of 54,000 patients, the researchers calculated the distribution of verbal scores for each combination of eye score and motor score. They then combined GCS eye and motor scores into EM scores, and determined the distribution of verbal scores for each EM score. Based on this, they identified a verbal score that clinicians could impute for every EM score.
“Without the verbal component of the GCS, the GCS sum score (eyes + Verbal + motor) cannot be determined, so we developed this imputation tool to enable clinicians to benefit from these prognostic tools for decision making in patients with the most severe brain injuries, where the verbal score is not testable,” Brennan says.
To test these imputed verbal scores, the researchers substituted imputed verbal scores for actual verbal scores within the framework of prognostic charts, which the authors had previously developed.
These charts take into account the total GCS score, pupil response, age of the patient, and findings of abnormalities. The charts provide predictions about patient outcomes, and are designed to help clinicians make decisions and communicate across teams.
The authors outline in their paper, ‘A practical method for dealing with missing Glasgow Coma Scale verbal component scores,’ published in the Journal of Neurosurgery, that they found that the information gleaned from imputing verbal scores according to each EM score was similar to the variations between precise eye and motor scores, and from full information on verbal, eye, and motor responses.
Imputing verbal scores doesn’t add new information, but allows clinicians to use prediction and prognostic models by filling in verbal data needed for those systems to work.
“We have developed several tools related to the GCS that enhance its ease of use and clinical application, including the GCS Aid, the GCS-pupils score and the GCS pupils Age CT prognostic charts,” Brennan tells NR Times.
“These have been designed to address specific needs. For example, the GCS Aid was developed to support training in assessment of the GCS and to enhance reproducibility of assessment. The GCS pupils score and prognostic charts provide a simple but robust prognostic tool that can be used in the clinic.”
“Prognostic scores are helpful for clinicians to get a reliable prediction of patient outcome, to inform clinical decision-making and to support communication with a patient’s family.
“We know from previous research that clinicians can tend to predict overly pessimistic outcomes for patients, particularly those with severe brain injuries, so these prediction models are designed to prevent that. With our imputation tool, the sum score can be determined and prognostic models used in real-time in the clinic.”
The researchers believe that being able to add verbal scores will help clinicians quickly determine the severity of acute brain injury and estimate patient outcomes.
“We know from the enquires we get and from the number of downloads of materials from our website, that these are very popular and are having a positive impact on clinical care around the world.
“We are confident this missing verbal score imputation tool will be just as positively received,” Brennan says.
Update:concussion in sport
A run through the latest developments in concussion in sport research and protocols.
A study published in the May 27 in the medical journal of the American Academy of Neurology, looked at a biomarker called neurofilament light chain, a nerve protein that can be detected in the blood when nerve cells are injured or die.
Levels of the protein in the blood were measured and it was found that those with three or more concussions had an average blood levels of neurofilament light 33 per cent higher than those who had never had a concussion.
“The main finding in the study is that people with multiple concussions have more of these proteins in their blood, even years after the last injury,” said study author Kimbra L. Kenney, M.D of the National Intrepid Center of Excellence.
“Additionally, these proteins may help predict who will experience more severe symptoms such as PTSD and depression. That’s exciting because we may be able to intervene earlier to help lessen the overall effects of concussions over time.”
Following on from our article on the game changing tests into concussion in children it has been found that concussions sustained by high school athletes continues to increase.
Injury data collected from 100 high schools for sports including football, volleyball and wrestling found that, between the academic years 2015 and 2017, the average amount of concussions annually increased 1.012-fold compared to the previous four academic years.
Approximately 300,000 teens suffer concussions or mild traumatic brain injuries each year while playing high school sports.
Wellington Hsu, M.D, professor of orthopedics at Northwestern University’s Feinberg School of Medicine said: “It’s understandable to think that with increased awareness among practitioners who diagnose concussions, the incidence would naturally rise; however because we’ve studied and reported on concussions for a number of years now, I feel that enough time has passed and I would have expected to see the numbers start to level out.
“What we found was that the overall average proportion of concussions reported annually in all sports increased significantly, as did the overall rate of concussions.”
The data also revealed that in gender-matched sports, girls seemingly sustain concussions at a higher rate than boys.
The effects of concussion in young people continues to be a key concern, with links between concussion and football, specifically when heading the ball leading to some big changes when it comes to training guidelines.
Coaches have been advised to update their rules connected to heading the ball in training, with no heading at all in the foundation phase for primary school children and a “graduated approach” to introduce heading training at under-12 to under-16 level. This guidance is expected to be issued across the continent later this year.
These new guidelines were recommended following a FIELD study, joint-funded by the English FA and the Professional Footballers’ Association, published in October last year, finding that professional footballers were three-and-a-half times more likely to die of a neurodegenerative disease than members of the general population of the same age.
The study did not identify a cause for this increased risk, but repeated heading of a ball and other head injuries have been identified as possible factors.
Dr Carol Routledge, director of research at Alzheimer’s Research UK, said: “Limiting unnecessary heading in children’s football is a practical step that minimises possible risks, ensuring that football remains as safe as possible in all forms.
“As such, measures to reduce exposure to unnecessary head impacts and risk of head injury in sport are a logical step. I would, however, like to see these proposals introduced as mandatory, rather than voluntary as present, and a similar approach to reduce heading burden adopted in the wider game of football, not just in youth football.”
A similar stance, that also includes restrictions during matches, has been in place in the US since 2015 after a number of coaches and parents took legal action against the US Soccer Federation.
There is clearly a need to educate coaches and athletes about the concussion recovery process while equipping physicians with quick diagnostic tools.
A partnership between Neurotechnology and brain health analytics player SyncThink and concussion education technology specialist TeachAids aims to offer the latest concussion education combined with mobile, objective measurement technology.
EYE-SYNC, which allows a clinician to use analysis to decipher between brain systems to determine whether a patient may be performing poorly or impaired, will create a brain health education and evaluation system based on the implementation of CrashCourse, an interactive educational module that teaches athletes, parents and coaches about concussions.
This implementation will be available to all SyncThink partners which include top athletic organisations and clinical partners providing medical care and education for over 10,000 high school and college athletes.
This implementation could make tracking those who receive concussion education easier while complying with sport governing bodies educational requirements.
SyncThink founder and medical advisor to TeachAids, Jamshid Ghajar said: “Using the SyncThink platform to feature the CrashCourse educational technology for athletes and coaches is brilliant.
“Now clinicians can use the Eye-Sync tests and metrics alongside CrashCourse’s latest evidence-based information on concussion.”
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