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.
Taking time to look back – so the way ahead is clearer
Reflective practice within healthcare settings is widely talked about, but not always so easy to implement in the workplace. NR Times speaks to one neurological centre about how it benefits patients and staff there.
Reflective practice and discussion in healthcare settings is a professional requirement for nurses, as laid out by the Royal College of Nursing revalidation requirements as part of their continuous professional development.
It allows professionals to take time to pause and reflect, communicate and plan, which undoubtedly leads to better outcomes for patients and staff.
But in reality, reflective practice can often be left to the bottom of the pile, underneath many of the competing responsibilities facing staff who are often pressed for time.
It could be argued that this is also why reflective practice is so important – healthcare staff are facing so many pressures that it actually makes less sense to neglect the important work of individual and team reflection.
The Royal College of Nursing defines reflective practice as: A conscious effort to think about an activity or incident that allows us to consider what was positive or challenging and if appropriate
plan how it might be enhanced, improved or done differently in the future.
Staff at Elysium St Neots Neurological Centre in Cambridgeshire started doing regular, weekly reflective practices when its new hospital director, Fiona Box, came into the role a few months ago.
The nurses and healthcare assistants from a ward are invited into the meetings and in their absence the therapy staff monitor patients and provide activities.
“We thought it would be helpful for team members to give them the opportunity to think, learn, and to hear their opinions,” says charge nurse Jemima Vincent.
“If we have an incident with a patient, we discuss it in the session” she says.
Sessions are led by the management team, with added input from psychology teams on each ward.
They will talk through any strengths, weaknesses and opportunities, and work through an analysis to learn from the incident and create an action plan.
They talk about the worst-case scenario in relation to an individual situation and discuss how staff would manage that, so they’re better prepared in the event of it happening.
While they focus on one patient at a time, issues arise during conversations that bring in their wider experiences.
In an article* published in the Nursing Times in 2019, Andrea Sutcliffe, chief executive of the Nursing and Midwifery Council said: “In these challenging times for health and social care, it’s so important that collectively we do all we can to support our health and care professionals, and their employers, in devoting time to individual, reflective, personal and honest thinking.”
Fiona has received encouraging feedback from staff, who say the meetings help the staff feel much more involved in a patient’s care and allow the team to increase their knowledge and understanding resulting in a more consistent way of working.
“Healthcare workers often don’t fully understand patients’ diagnoses or why they’re reacting in a certain way, for example,” Jemima says.
“They know a patient presents with certain behaviours and may be taking medicine to help them cope but they’re not aware why the patient is showing signs of aggression and the best response to deescalate the situation,” she says.
“It’s a learning opportunity for staff, because reflective practice means that they can understand a patient’s diagnosis and why they behave how they do,” Jemima says.
“Reflective practice answers their ‘why’ questions, and gives them a more open mind.”
Jemima also benefits from the meetings; it’s a way for her to get to know staff better, especially when it comes to learning opportunities.
“I’m able to understand what level of support each member of the team requires, including training needs and if they need more knowledge on a specific topic.”
In her final year as a mental health nurse student on extended clinical placement at Elysium St. Neots, Jo took part in a reflective practice session.
She had just finished her dissertation, in which she looked at how settings can increase the opportunities and variety of reflective practices within hospital settings.
The aim of Jo’s session was to reflect on the recent deterioration in a patient’s mental state and the resulting impact on their well-being to ensure staff had a consistent approach to support the patient.
The hospital’s director Fiona asked the team about the patient’s care plan, diagnoses and needs and wishes.
Where staff were unsure of the answers to questions, Jo says Fiona gave them answers and encouraged the team to share their knowledge of the patient, problem solve and come up with an agreed plan to move forward with.
Jo found the session helpful and was impressed with how the healthcare assistants were so involved in the discussions about all aspects of the patient’s care, including the more clinical elements.
Healthcare assistants told her they found the session helpful too and that it made them feel like they had a better understanding of the patient’s changing mental state, behaviours and needs.
Jo says having the opportunity to reflect on practice is a crucial skill for all healthcare workers to help them learn from their experiences and increase self-awareness, which, in turn, can improve individual professional standards, strengthen teams and enhance patient-centred care and clinical outcomes.
For referrals to Elysium St Neots Neurological Centre or other Elysium centres visit: www.elysiumhealthcare.co.uk/neurological
Reference source: https://www.nursingtimes.net/news/ professional-regulation/nmc-highlights-importance-of-nurses- reflection-on-practice-18-06-2019/
Robots and resilience at Askham Rehab
NR Times reports on a new rehabilitation approach taking place in Cambridgeshire.
Despite a year of relentless change and upheaval for all involved in neuro-rehab, one provider in Cambridgeshire has been able to keep its ongoing development on track.
Askham Rehab, part of the Askham Village Community, is a recently-launched specialist rehabilitation service incorporating the latest in rehab robotics and sensor assisted technology.
While the firm has invested in state-of-the-art technology to do the heavy lifting, however, its rehab services remain person-centred, as director Aliyyah-Begum Nasser explains.
“We’re a specialist rehab centre in essence, and so, although the robotic technology helps us to get the most out of our patients and staff, we are very much family-focused.
The equipment is obviously fantastic but we know from experience that a person’s mindset, and their ability to sustain whatever improvements they make, comes down to the people who are supporting them – their family members.
“We’ve been on some real journeys with many of our family members who just didn’t understand the impact of a brain injury in terms of how it can impact behaviour or what it can do for cognition.
“Once they understand that, suddenly they become a lot more compassionate, and a lot more supportive; they become part of the recovery process, rather than being a frustrated observer.”
With recognition of the family’s paramount importance to recovery, Askham Rehab does everything within its power to harness this force – including by enabling families to stay together in specially-designed apartments on site.
Aliyyah-Begum says: “The flats are fully adapted, with cantilever cupboards, height-adjustable sinks in the bathroom and full wet room with turning spaces.
“We have the patients themselves participating in rehab, specifically to their programme, but relatives are also there from the beginning, seeing the improvement and being part of our process from the outset.
“We think of the centre as more of a rehab environment; it’s not a just care home with therapy as an added extra.
“So from the minute our patients wake up to the minute they go to bed, everything is based around their recovery goals, and everyone is working together towards achieving them.”
And robotics are an important tool in pursuing these goals through patient exercise. They help therapists to achieve the repetitions and intensity needed to progress their clients, as Aliyyah-Begum explains.
“The point of the robotics is that they respond to the patient. For example, if you set the machine on a left lower limb, but it senses that there is more pressure being exerted through the right limb than the left, it will automatically respond to make sure the patient is moving the correct part of their body.”
The centre’s head of rehab and nursing, Priscilla Masvipurwa, says: “This is a real a game changer in our approach to rehabilitation.
“Robotics help to bridge the gap, increasing the frequency and repetitiveness of treatment, something that’s an essential part of the process.
“We anticipate that this will enable us to support our patients in reaching their goals in a more efficient and sustainable way.
“The centre has so far invested in four items from robotic rehabilitation firm Tyromotion, but is looking to add more over time, as the benefit to both staff and patients becomes ever more evident.
Aliyyah-Begum says: “It’s really important to the team at the centre that the robotics aren’t just seen as an add on.
“There is a lot of nervousness about robots replacing therapists, but our service is still very much therapy-led.
“What this means in practice is that, where a resident would previously have had maybe an hour of therapy time in an afternoon, now you have an hour of therapy time, and then you can carry on exercising if you want to, or carry on playing games with other residents.
“For example, one of our machines, the Myro, enables patients to play games like bat and ball, or perform virtual tasks like sweeping leaves.
“However, because it is all sensor-assisted, if it senses that the patient needs to work a certain hand, it will alter what it is asking them to do accordingly, while they won’t even necessarily feel they’re having therapy – it’s all part of the game, and part of their socialising with other residents.”
Askham Rehab forms part of the Askham Village Community, on the edge of Doddington village, in Cambridgeshire.
It provides specialist care for people of all ages, offering day visits, respite care and continuing long-term support, both on-site or at home.
The site consists of five homes, three of which are specialist neurological facilities. In total, the neuro-rehab team can look after up to 52 patients at any one time, with 120 staff made up of rehab professionals and specialists.
The team comprises carers nurses, physiotherapists, occupational therapists, speech and language therapists and psychologists.
Aliyyah- Begum believes that the introduction of the robotic rehab services, combined with the patient-led therapy the group has been offering for 30 years, can only enhance the centre’s outcomes.
She adds: “We know that there is an increasing number of care homes that offer specialist therapy, but the difference with Askham Rehab is that we have embedded it into the whole culture of our setting – and the outcomes really speak for themselves.
“We often discharge people earlier than planned, and that’s a testament to the fact that the patients are really working hard with the team throughout their stay with us to achieve their goals – and that is the key.”
For more information about Askham Rehab, visit www.askhamrehab.com
Astrocytes identified as master ‘conductors’ of the brain
In the orchestra of the brain, the firing of each neuron is controlled by two notes – excitatory and inhibitory – that come from two distinct forms of a cellular structure called synapses.
Synapses are essentially the connections between neurons, transmitting information from one cell to the other. The synaptic harmonies come together to create the most exquisite music–at least most of the time.
When the music becomes discordant and a person is diagnosed with a brain disease, scientists typically look to the synapses between neurons to determine what went wrong. But a new study from Duke University neuroscientists suggests that it would be more useful to look at the white-gloved conductor of the orchestra – the astrocyte.
Astrocytes are star-shaped cells that form the glue-like framework of the brain. They are one kind of cell called glia, which is Greek for “glue.” Previously found to be involved in controlling excitatory synapses, a team of Duke scientists also found that astrocytes are involved in regulating inhibitory synapses by binding to neurons through an adhesion molecule called NrCAM. The astrocytes reach out thin, fine tentacles to the inhibitory synapse, and when they touch, the adhesion is formed by NrCAM. Their findings were published in Nature on November 11.
“We really discovered that the astrocytes are the conductors that orchestrate the notes that make up the music of the brain,” said Scott Soderling, PhD, chair of the Department of Cell Biology in the School of Medicine and senior author on the paper.
Excitatory synapses — the brain’s accelerator — and inhibitory synapses — the brain’s brakes — were previously thought to be the most important instruments in the brain. Too much excitation can lead to epilepsy, too much inhibition can lead to schizophrenia, and an imbalance either way can lead to autism.
However, this study shows that astrocytes are running the show in overall brain function, and could be important targets for brain therapies, said co-senior author Cagla Eroglu, PhD, associate professor of cell biology and neurobiology in the School of Medicine. Eroglu is a world expert in astrocytes and her lab discovered how astrocytes send their tentacles and connect to synapses in 2017.
“A lot of the time, studies that investigate molecular aspects of brain development and disease study gene function or molecular function in neurons, or they only consider neurons to be the primary cells that are affected,” said Eroglu. “However, here we were able to show that by simply changing the interaction between astrocytes and neurons — specifically by manipulating the astrocytes — we were able to dramatically alter the wiring of the neurons as well.”
Soderling and Eroglu collaborate often scientifically, and they hashed out the plan for the project over coffee and pastries. The plan was to apply a proteomic method developed in Soderling’s lab that was further developed by his postdoctoral associate Tetsuya Takano, who is the paper’s lead author.
Takano designed a new method that allowed scientists to use a virus to insert an enzyme into the brain of a mouse that labeled the proteins connecting astrocytes and neurons. Once tagged with this label, the scientists could pluck the tagged proteins from the brain tissue and use Duke’s mass spectrometry facility to identify the adhesion molecule NrCAM.
Then, Takano teamed up with Katie Baldwin, a postdoctoral associate in Eroglu’s lab, to run assays to determine how the adhesion molecule NrCAM plays a role in the connection between astrocyte and inhibitory synapses. Together the labs discovered NrCAM was a missing link that controlled how astrocytes influence inhibitory synapses, demonstrating they influence all of the ‘notes’ of the brain.
“We were very lucky that we had really cooperative team members,” said Eroglu. “They worked very hard and they were open to crazy ideas. I would call this a crazy idea.”
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