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“The whole process was shocking”

Families affected by motor neurone disease are fighting a losing battle for accessible housing and home alterations, as Ethan Sisterson reports.

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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 Buckey, motor neurone disease patientDarren’s story 

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.”

Rising costs 

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.

Recommendations

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.

Read the Motor Neurone Disease Association’s report in full here.

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Insight

Symptom variation over time – learning in real time from lived experience

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In the UK, the average patient will see a GP around seven times a year, according to the Royal College of GPs. This is a rise from 20 years ago, when a patient would see their family doctor around three times a year.

With an average appointment time of 9.2 minutes, British patients see their family doctor for less time than patients in the United States, Sweden, Canada, Spain and Japan. 

There are 8,760 hours in a common (not leap) year. In the UK, patients have about one hour per year on average with a UK GP. During the other 8,759 hours, symptoms come and go over weeks or months, so what is recalled at the consultation may not be accurate. Such symptoms sometimes just go away, but at other times these symptoms are a sign of something that needs treatment. We are often told “if it doesn’t go away within x days, see your GP”. Yet 2020/1 has made this more challenging to do, whether virtually or face-to-face.

So much to say – so little time

There’s the challenge of getting the phone call answered at the GP surgery, getting a consultation time that suits and the anxiety of getting there and waiting for your time slot. How easy is it to forget some of the detail of the illness? How can doctors solve problems with imperfect information and poor communication as well as recall error? Is “doorknob syndrome” becoming a greater problem?

Healthwatch UK advises: “Before you see your GP, think about what you want to say. You can always write down your symptoms, worries and any questions that you would like to ask, so you don’t forget.”

Similarly, Cancer Research UK and other organisations provide tips to help patients to get the most from such precious but brief appointments. Top of their list are:

  • Write down your symptoms including when they started, when they happen and how often you have them.
  • Write down anything that makes them worse or better.

How many patients do this, or have the capability or opportunity to do it even more effectively?

Empowerment? 

How can doctors feel empowered when their time is so pressurised, when there is a tsunami of data, information and knowledge let alone a mountain of paperwork and covid precautions on top of that? How can patients feel empowered when it is so difficult to see a doctor when they are most worried about their signs and symptoms?

COVID-19 makes things more complicated. Patients with multiple symptoms that vary from day to day find it especially hard to give a clear and concise summary. Even worse if they have fatigue and brain fog. Recall error is more of a problem. Could the patients be more empowered?

Symptom-tracking and real time data

There is a conundrum – how do we empower the patient-doctor relationship and strengthen the therapeutic alliance when there is less face-to-face time and longer waiting lists and more complex conditions? Achieving any of these might be easier if there was an increase in consultation time. 

This draws attention back to the advice to patients to prepare to get the best from their consultation, how can digital technology help a good proportion of patients to do this ahead of the consultation? It is accepted that all patients will not use technology. 

Accurate responses to questions about when symptoms started or when they happen and how often they occur could become digital real time data – provided this is sufficiently easy and well-structured. The acceleration of public health awareness and communication between doctors and patients via NHS Digital tools regarding symptoms has been a legacy of covid-19. While accepting that all patients won’t need or want digital, empowering those who do want or need it can relieve some pressure on the system as a whole and, over time, more will embrace it.

TIYGA™ – time is your greatest asset

So how do we manage to utilise time with GPs, nurses and specialists more efficiently? Patients and doctors must use their time together more productively and anything that can be captured, measured, calculated, and displayed in the right way ahead of the consultation must happen. Healthcare professionals are trained to deliver consultations, but patients are not trained in how to prepare to see different healthcare professionals with different specialities. In these time-poor days, it is more important than  ever that patients present the right data to the right person at the right time and in the right place.

Personalised medicine is increasingly important in preventing, predicting, and managing many health conditions and we don’t just mean at genomic level, but more holistic treatment and accepting that not all one size fits all. In 2019, the UK had 55.5m smartphone users and this is expected to rise to 64.9m by 2025. According to Statista, in 2024, the smartphone user penetration rate is expected to reach 88.1 per cent of the total UK population – 93.7 per cent in 2025. In 2020, 70 per cent of 55–64-year-olds owned a smartphone. How can we justify not making better use of this high adoption rate?

Talk to many clinicians and they’ll tell you that all their patients don’t have a smartphone and don’t have access to broadband. In 2020, the overall share of households in the United Kingdom (UK) that had access to the internet was 97 per cent. The overall share of households in the United Kingdom (UK) with internet access was six percent higher than the average of the European Union (EU-27). 

The challenge is not in the technology. We send people into space, we replace human vital organs, we can replace joints and even create and successfully rollout vaccines to fight novel virus at record speed. Do we encourage people to use popular consumer devices to record simple, routine health data in a way that can help our healthcare professionals to get more efficient input to consultations? 

We will always need GPs, and nobody expects every poor pensioner to become a geek but symptom-tracking by smartphone could reduce the time many patients need to spend with a GP, fewer consultations might be required to make a diagnosis and the first consultation at secondary care could be more efficient. Taken together, these factors could reduce some pressure on waiting lists.

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Insight

Who am I? Self-identity following an Acquired Brain Injury

Dr Anita Rose, consultant clinical neuropsychologist at Renovo Care Group, explores the issue for NR Times

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Who am I? Arguably life’s most defining problem. The answer as we all know is identity. But this is not the complete answer because “who I am”, my identity, is an all-encompassing system of memories, experiences, feelings, values, roles, thoughts and relationships.

When I am asked who I am my answer is likely to be multi-faceted and the answer will depend on the situation I am in.  I might say. I am a mum, a wife, an Ouma (Grandmother), a sister, a clinical neuropsychologist, a friend, a regular church goer and so the list goes on. 

This question permeates my working life as I sit with patients who want to know who they are now, how they can be who they used to be. They are scared, frustrated, anxious and believe that they can no longer be “me”. They face what the world calls an “identity crisis”. They are looking backwards prior to the traumatic, sudden, life changing experience they have gone through to this moment in time, to now after the brain injury. 

This exploration highlights a gap, the gap between who they were before to who they are now.  It is this gap that leads to the questions of “Who am I now?”, “What can I do now?”, “Where do I fit in?”.   

Dr Anita Rose

Prior to their injury they had roles, “identities”, felt valued, helpful, independent, and confident in their life’s purpose. But now they report feeling lost, useless, frightened, insecure, stupid, lazy, and unreliable.

The gap seems insurmountable as they will report feeling they have gone from being kind, caring, and happy, to angry, sad and being a burden. These feelings are driven by the comparison of self-perceived capabilities pre- and post-injury. Such comparisons lead to the experience of “I am not me anymore” as the brain injury at a deeper level alters the sense of self and the qualities that define who they once were.

When I first started working in neuropsychology many years ago, I found the concept of loss of identity a real challenge. How can I support those whose lives have been dramatically changed “in an instant”, who maybe now very physically disabled and cannot return to their employment, their sport, their previous life? 

I noted that many times individuals would turn to those around them to feed their self-worth.  They would seek reassurance and praise from others to feel okay about themselves. Whilst in the moment such validation might support their emotional wellbeing, dependency on external validation is extremely detrimental.

Often patients would be perceived by caregivers as presenting with behaviours that challenge because they might be seen as demanding, for example constantly buzzing their call bell for reassurance.  The reality is that sense of self should not come from other people but come from within. The most important relationship we can have is with ourself.

Over the years of clinical work, participating in research and listening to my patients stories I have learnt that the only way to support a person to develop that new sense of self is to recognise each patient brings with them their own unique life history, values and social context. 

I have found that for many of my patients it has been about working together in a collaborative and supportive therapeutic relationship, a collaboration where the individual in is the centre. Based on mutually agreed goals we start out on a journey of rediscovery.

The initial stages of the journey are about grief and loss and enabling someone to express their grief and being given permission can be very powerful moment. The next stages are often around building awareness of the results of the brain injury as much raising self-awareness of the “me before” and the “new me”. 

What is different? What is still the same? Can we build the bridge between the two parts of “me”? 

Moving along the journey we start to look at the most important relationship in their lives, the one with themselves.  When self-identity is challenged the ability to be compassionate towards one’s self is reduced.  Finding news ways to promote self-compassion i.e. kindness and understanding towards one’s self can support the individual in finding meaning in their lives and achieve their personally valued goals.  

Kenneth Gergen (1991) said: “One’s identity is continuously emergent, re-formed, and redirected as one moves through the sea of ever-changing relationships. In the case of ‘Who am I?’ it is a teeming world of provisional possibilities.” 

The journey can be full of mountains and valleys, monsters to face but in my work at Renovo Care Group we recognise the various challenges these cause both the individual and their families.

We appreciate the need for a directed multi-disciplinary approach to work collaboratively with our patients by supporting them to re-engage in meaningful activities and to find meaning in their life following their brain injury. In other words, we are trying to re-establish the “bridge” across the gap between old and new. We support the patient along the journey leading to the “new me” after brain injury and look at how a comprehensive IDT evaluation and treatment of the “damaged sense of self” can lead to increased self-esteem, self-efficacy, and self-empowerment. All this leads to an improved quality of life for both our patients and their families.

But to end, it is the patient voice that speaks the loudest. A recent patient after going through this journey spontaneously said in his last session, whilst leaving the therapy room, “I have re-found myself”. He may still be profoundly disabled as a result of his brain injury and not met his original goal to walk again, but he has found an identity, a new sense of self that has emerged and reformed as he has found reconciliation between his self “before” and his “new me”. A bridge has been built across the gap. 

It is for this reason that I find my role, and the role of the IDT (Interdisciplinary Team), in neurorehabilitation so fulfilling. As a patient learns to be self-compassionate, moves towards reconciliation and acceptance of the “new me”, regardless of whether or not their original goals have been met, the end of their rehabilitation process has been positive as they leave feeling empowered and able to believe they have a world of “teeming provisional possibilities”.   

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Insight

The importance of continuing rehabilitation in the home environment

The team at Neurokinex share insight into the role of rehab at home and how to maximise its potential

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Community-based rehabilitation centres are powerful tools which can support you in your recovery journey. 

As well as offering you access to expert advice and guidance, specialist equipment, novel and intensive training modalities, you will have the opportunity to receive client-centred sessions as part of structured rehabilitation programmes supported by neurorehabilitation experts. Together, they create the optimal environment for you to work towards goals and maximise your recovery potential. 

In-centre rehabilitation sessions are a must have for any rehabilitation plan: those who can, should attend as much as possible to maximise their progress. However, for many people, barriers – such as travel and funding – stand in the way of them attending for the advised and required frequency. It is likely, therefore, that this time constitutes just a fractional part of the overall time most individuals should be committing to their rehabilitation. 

Research has consistently shown that both exercise intensity and high repetition are essential to maximising recovery following neurological injury. Therefore, individuals should look to establish a strong home exercise routine as part of their rehabilitation plan to maximise on these principles. An established routine will also maximise the benefit of your other therapy sessions, keep you focused, active and committed to your rehabilitation journey. 

However, building and dedicating to a home exercise programme can be challenging. Here is some advice from our team at Neurokinex for upgrading your home exercise programme based on our experiences with clients.

“What should I be doing at home?”

Firstly, make sure that your home exercise programme contains everything it needs.

Many of you will already be following a rigid and intensive stretching programme and this should continue to formulate the core of your home exercise routine to help manage spasticity and contractures. Dedicate time to moving your body into different positions, prone is great, which can be effective in allowing muscles to be stretched for prolonged periods of time and in alleviating pressure.

Standing should comprise a proportion of your daily routine. Standing for 30 to 60 minutes a day can help with bladder and bowel function, joint range of motion and bone demineralisation, along with promoting improved quality of life.

Decreased activity also increases the risk of developing cardiovascular disease and diabetes, therefore it’s important to find a way to incorporate some regular aerobic exercise to benefit cardiometabolic health. One guideline suggests 30 minutes of moderate to vigorous exercise three times per week.

Last but not least, dedicate additional time to completing any rehabilitation exercises prescribed by your trainer.

“The requirement seems like a lot, how do I fit it all in?”

Fitting all the above into your daily routine might feel impossible alongside incorporating the additional exercises prescribed by your trainer. The best way to start is by identifying if any of your rehab exercises can be integrated into time spent doing other things.

A couple of examples of this would be completing your shoulder or hand exercises whilst in your standing frame. Or completing your upper or lower limb exercises whilst spending time prone or as part of your morning stretching routine in bed. This would help maximise your efficiency, achieve those all-important repetitions without the feeling of having to go out of your way to put aside too much extra time. 

Just like your sessions with your trainer, home exercise should be effectively programmed and this can be another helpful way to save you time. As well as helping you remain engaged and feel like you are progressing.

Typically, you’ll have many areas that you wish to improve on with many associated exercises to do. It is easy to fluctuate between these if you don’t have a plan and though rarely are these goal areas mutually exclusive, it is important to work each area independent of the other.

We often prescribe clients five exercises, taking no more than 30 to 45 minutes a day, that can be progressively tracked over four to eight weeks. This helps to promote overload, adaptation and better tracking of progress towards the goal area. It also means that you set a point of review and importantly introduce variation to keep things fresh and exciting.

Some common short-term goals that we use with clients include increasing the number of repetitions, timed seated or standing balance and physical exertion tests, such as a five-minute time trial. 

“I over-did it last week”

Consistency beats intensity. Often, clients feel the need to work themselves to the maximum every session. Though this approach can produce short term results, it usually leaves them exhausted and they rarely maintain consistency long enough to see significant change.

Remember we’re playing the long game here. Our advice is to choose an exercise routine that you can execute even on your worst week. 

“I’m worried about doing exercises incorrectly” 

An unfortunate side effect of client-centred exercise is that people can become nervous to perform exercise without the keen eye of a trainer by their side.

If this is you, start with a few exercises that you are comfortable with and have completed in your rehabilitation sessions. Follow this up by challenging yourself to try a new exercise, film it and take it to your next therapy session for your trainer to okay.

Nine times out of ten they’ll be delighted you’re trying new things!

“I can’t remember what I did”

Keep a log! The most important piece of advice that we can give you is to start keeping a diary. In it note the rehabilitation you do each day and reflect upon how it went. Don’t forget to include your achievements and any significant milestones. This will form an essential part in your rehab journey and help you to stay committed and invested.

Most importantly, take this with you to your next session and show your trainer all the great rehab that you have been up to. We want to hear that you are continuing your rehabilitation at home.

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