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Unequal opportunities

A third of people with a brain condition face workplace discrimination. Sarah Sinclair reports on the challenge of getting into employment – and staying there.

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People living with a brain injury or neurological condition should have more access to employment than ever before.

But experts in the field paint a very different picture; in which individuals are struggling to find employment, withdrawing from work all together and experiencing discrimination.

In July 2019, the Neurological Alliance published the most comprehensive survey undertaken of people living with neurological conditions.

It found that one in three respondents have been discriminated against as a result of their condition, and almost a third (29 per cent) have had their contract of employment terminated.

The report came a week after the Scottish National Party MP, Martyn Day, called on the UK government to address the employability gap between those living with an acquired brain injury (ABI) and the rest of the population in parliament.

In Scotland – where it is estimated that ABI is the most significant cause of disablement for people of working age – only around 40 per cent of working-age disabled adults are in employment, compared with more than 80 per cent of those without a disability.

Since the introduction of the Equality Act 2010, those who are disabled should have more access to paid work than ever, yet the disability employment gap remains high and disabled people continue to be paid less on average than the general population, says the Neurological Alliance report. Employment discrimination appears to be rife, despite the legislation.

“People with a brain injury experience discrimination in all areas of their lives and work, sadly, is one of them,” says occupational psychologist Suzanne Guest, who has helped hundreds of people with neurological conditions back into employment, through her support service, Work in Mind.

The group helps individuals who have suffered a brain injury to find meaningful employment, either with their previous employer, or through supporting them to find new work or undertake volunteering.

The recent findings come as no surprise to Suzanne. She has worked with clients who have been dismissed on competency grounds, as well as those who have felt forced to resign themselves because the workplace hasn’t been tolerable for them.

One of the key provisions of the Equality Act is that employers are legally obliged to make ‘reasonable adjustments’ for employees.

However, in Suzanne’s experience, some employers have been reluctant out of concern that it would be discriminating against other members of staff.

“If it’s things like getting a desk or a special chair, they’re happy for that, but something like restructuring someone’s breaks, or giving them a bit of feedback, that doesn’t seem to be as well-received,” she says.

​Often, individuals don’t want to put themselves through the turmoil of an employment tribunal, which would be required to establish whether those adjustments had been put in place and the employer was breaching the Act.

Also, until recently, many couldn’t afford it, with fees of up to £1,200 for such cases, which were ruled unlawful in 2017.

What really saddens Suzanne though, is that many of her clients have felt discriminated against before they’ve even made it into the workplace.

“A lot of my clients will volunteer before they go back to work, and I’ve seen more discrimination in the voluntary sector,” she says.

One of Suzanne’s clients was stopped from volunteering because of his epilepsy.

Another, whose employer was initially supportive after his accident, returned to work on a voluntary basis but was dismissed within a month because he was struggling to relearn his job.
“These are people who either wanted to have some meaningful occupation of their time or to build themselves back up to getting into paid work,” she says.

“Those bars are hitting them before they’ve even got to the workplace, because the charities aren’t being supportive either.”

Suzanne would like to see work taken more seriously as an important element of rehabilitation.

“It would be good to see work classed as part of the neuro-rehab package. I see work as being the last step to gaining independence. Often the NHS does a great job of saving your life – and of course it has to prioritise daily living skills – but work doesn’t tend to be covered in statutory services.”

This is something David Martin, chief executive of multiple sclerosis charity the MS Trust, would agree with. The trust has found that many people diagnosed with the condition are advised by health workers to give up work much earlier than they would like, or need to.

“We’ve heard time and time again that when people are diagnosed they’re encouraged by health professionals to give up or reign back on work,” David says.

Figures show that only 36 per cent of individuals with MS are in full-time employment, compared to the national average of 75 per cent.

“Some of that might be down to the discrimination mentioned in the Neurological Alliance report, but I think some of it is down to the attitude of the health services as well,” he says.

“I’ve got anecdotal evidence that there are people in the [NHS] who have encouraged people with MS to stop working, or cut down.

“That can sometimes be good advice but certainly, in our experience, there are many people with MS who are actually stopping or cutting back on work much earlier than they need to.

“For some people, the condition might impact them so significantly and severely that they are simply not able to work and, yes, you do need to preserve your energy, but it’s that health and wellbeing aspect.

“Your brain activation is going to be better if you’re doing some sort of work, if you’re able to.”

It’s not only the individuals themselves who are losing out, David says: “From an employers’ point of view there’s a lot of wasted resources. A lot of people with skills, energy and passion are not getting the fulfilment of work and they’re not giving something back to society.”

As well as providing information online, the MS Trust facilitates a Facebook group of 10,000 people living with MS, where they can exchange advice and support for each other about working life with the condition.

“What we’re trying to do is provide information so that in an ideal world, if people are able to continue working, then they can do. There
has got to be a choice for the individual from a health and wellbeing point of view.”

But David believes much more needs to be done in educating employers, and other colleagues in the workplace, about MS and neurological conditions.

“About a third of people being discriminated against and forced out of work because of their condition is truly shocking and shows how much ignorance there is in the workplace at the moment,” he says.

On a charity bike ride last year, David met a company chief executive who had hidden his MS diagnosis for 30 years for fear of being discriminated against.

He adds: “It’s about educating employers and colleagues at work so they understand what MS is and what reasonable adjustments they might be able to make to improve things for the organisation and the individual.”

For brain injury survivors, however, returning to work can be immensely challenging, and it often requires a commitment from both the individual and the employer.

Remploy, the UK-based disability recruitment specialist, provides employment and skills support for disabled people and those with health conditions. It also helps employers to become more “disability confident”.

Vocational rehabilitation consultant at Remploy, Sarah Pearson, sets out guidelines for returning to work with a brain injury.

“There are benefits for the patient, the workplace, and society to finding factors that facilitate a successful return to work,” she says.

“The vocational rehabilitation process is a balancing act in individualised planning and support, as a partnership with the employer, needs to be developed, motivation needs to be generated and awareness built of abilities that facilitate return to work.

“With improved rehabilitation and greater awareness of the impact of ABI, it makes good business sense to ensure that the employee has the tools and support to be able to return to work successfully.”

Michelle Munt resigned from her job “out of guilt” after suffering a diffuse axonal brain injury in a freak traffic accident in 2014.

“I was working for a small employer and they didn’t necessarily do anything wrong, but it was the guilt that I was carrying around, that the company would financially struggle without being able to fill my role properly, which made me resign,” she says.

“I don’t think my situation is unique. There’s probably a large number who will end up giving up careers because they just don’t know what else to do.”

A previous career in recruitment led Michelle to set up Jumbled Brain, a coaching service which helps brain injury survivors back into the workplace.

It informs them about what reasonable adjustments they can ask for and assists with CV writing and interview preparation.

Applying for a job is a stressful situation for anyone, but particularly so for someone with a brain injury, she says: “You have the worry of having the employment gap in the first place, and then there’s what you actually put on your CV, which can be an issue for anybody, but particularly if your memory or concentration is not as good as it was.”

Michelle finds that the fear and guilt brain injury survivors may be dealing with also leaves them at a disadvantage in job interviews.

“In my own experience, we can be self- perpetuating,” she says. “Instead of putting our best foot forward as you are supposed to do in interviews, we make it harder for ourselves.”

While there are always times when it is appropriate to disclose information to a prospective employer, such as if reasonable adjustments need to be made, some survivors find themselves oversharing unnecessary information about their condition, which can lead to employers ruling them out.

“The other person may not have noticed anything they feel would be relevant to the role, but out of fear of what’s going to happen, they start divulging things that perhaps they don’t need to.

“It’s a frightening thing for anyone to hear, when you’re talking about an impairment, so employers tend to err on the side of caution.”

And yet, it doesn’t take a lot to accommodate someone with a brain injury, just a bit of care and creativity, according to Suzanne Guest. “Sometimes good brain injury management is just good management, as it involves giving clear instructions,” she explains.

“Systems that can be put in place can be simple and low tech, such as checklists and notice boards.

“These can be helpful for everyone. Other strategies, such as minimising distractions and letting people know that you check emails at certain times of day, are often recommended by business coaches as ways of being more productive.”

She adds: “It really doesn’t have to be expensive to include someone, and often people with brain injury can make really good employees.”
The key is to be able to look past the challenges, and focus on an individuals’ strengths, believes Michelle.

“Most of us struggle with brain fog or forgetfulness and therefore we worry about it a lot, but none of these are things that stop anybody going for the job that they want.

“We focus so much on our limitations – or what we perceive to be our limitations – we actually stop ourselves from going forward
for something. Just because you forget a word from time to time, doesn’t mean you’re not the right person for the job.”

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Brain injury

‘Don’t count the days, make the days count’

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In our latest interview with the Brain Injury team at St Andrew’s Healthcare, we meet Dr Lorraine Childs, a Consultant Clinical Psychologist on Rose ward, one of only three secure neurobehavioural units in the country.

Dr Childs and the team on Rose use a neurobehavioural approach that supports people who have a forensic background to re-learn skills that have been impacted by their brain injury.

As she explains: “Unfortunately, brain injury can result in an increase in aggression, so we do a lot of work to identify what a patient’s goals are and help them to achieve their aspirations in pro-social ways that preclude the use of aggression.”

Co-production between patients and the clinical team has led to the development of programmes such as ‘Better Lives’, used to encourage people to take an active role in decisions about their care. These type of approaches are transferable across all settings where people are receiving support and rehabilitation following a brain injury.

We spoke to Lorraine to find out more.

What is your experience in mental health? 

I have worked in mental health for over 25 years. I have worked across the UK including St Andrew’s, Broadmoor, Rampton and in New Zealand.

I specialise in Forensic Brain Injury. I used to specialise in LD but became very interested in the etiology of learning disabilities and people who had ABI from an early age.

Dr Lorraine Childs

What are the challenges in your role? 

People who have a brain injury and require secure care tend to benefit from consistent, structured treatment.

Many of our patients are negatively affected by change and inconsistency. Working with large groups of staff can make it difficult to keep things consistent and this has been especially pronounced during the pandemic. I try to counter this by keeping things simple and comprehensive.

What do you most enjoy about your role? 

Working with a team of staff and patients. Creating things together, that are meaningful and purposeful. 

On Rose we have a really good structured neurobehavioral programme, developed by staff and patients, which works at both a group and individual level.

Describe the service you work in and some of the approaches that you use.

Rose is a medium secure neurobehavioral ward for people who have forensic backgrounds. Unfortunately, aggression is one of the things which can accompany brain injury and this is why some people need secure care to keep them safe.

We work with a neurobehavioural paradigm, helping people to learn new skills or relearn skills that have been affected by brain injury. We give patients opportunities through extensive vocational options and a range of therapies. 

Our ‘Better Lives’ programme provides people with opportunities to learn life skills. Patients really understand that they are here as part of their journey to achieve a better life.

In fact, our ward icon and motto is Muhammad Ali and his quote; ‘Don’t count the days, Make the days count’. In other words, the patients can influence their own future every day.

Co-production is key to this programme. For example, as a result of ‘Better Lives’ sessions we have co-produced a ward clinical treatment philosophy, a healthy-living programme and an information leaflet for newcomers. Patients requested for this to include information about timetables, events, contacting family and there is a poem written by a patient about their experience of moving here. Feedback about this is positive, one new patient said “it is informative and puts the mind at ease”. 

We encourage patients to take an active role in decisions about their own care, especially via Positive Behavioural Support Plans and utilising feedback. Increasing involvement encourages ownership and responsibility, even within a necessarily restrictive setting, and can help equip patients for their future in settings of lower security and community.

Describe a typical patient presentation.

There is a very diverse group of patients on Rose ward. Ages range from late teens to 60s. If I had to describe a ‘typical’ patient it would be a male in his 40s who had a brain injury in his 20s, usually because of a road traffic accident or substance related, leading to a loss of functioning, cognition, social and physical abilities. 

Most people who come to Rose have spent up to 10 years in standard psychiatric inpatient units and often well over a year in prisons. In fact, 100 per cent have been in psychiatric units and 70 per cent in prisons but only 16 per cent have had any psychological or neurorehabilitation.

So for many, St Andrew’s is the first time they have had some treatment support for their brain injury needs. 

What is the difference between Rose ward and a general neurorehabilitation ward: 

Rose is very unique due to the forensic aspect of the ward. Rose specialises in working with people with high levels of aggression and working with people to help them to find alternative ways to express themselves and achieve goals.

What are the main interventions used: 

Our key intervention is the neurorehabilitation programme. This aims to assist patients in compensating for the deficits they have in communication, volition and motivation, by providing a scaffold structure where they can safely develop skills required for daily life that are lost because of their brain injury or lack of opportunities in early life.

We also do a lot of health promotion and healthy living work on Rose and have presented at conferences and won awards for our work. I think lockdown had a negative impact on most of our waistlines and so we have an opportunity for staff and patients to work together to improve our diet and wellbeing.

What sets St Andrew’s apart:

St Andrew’s provides a clear and structured pathway for neurorehabilitation patients, with evidence-based success for patient outcomes.

This shows how patients progress in terms of increased levels of cognition, social skills, reduced levels of aggression, and increased levels of leave within the community.

Most importantly however, the patients have the opportunity to move towards their life goals. 50 per cent of patients from our Medium Secure Unit go straight to community rehabilitation. Most others advance to low secure. All go closer to home. This is what we are here to do. We do it well and help to shape Better Lives.

St Andrew’s Neuropsychiatric service provides specialist pathways for brain injury, dementia and Huntington’s disease across secure, non-secure and step-down settings. To find out more visit the website HERE

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Insight

The Importance of Being Earnest in Transitional Services

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Throughout childhood there is one team which deals with everything that the patient would need. As the children continue to grow, we wonder what will happen to them when they are too old to be cared for by the same team. So, what do we do with young patients who have been cared for very intimately by the paediatricians?

When they become adults, they could potentially find themselves thrown into a whole new world of healthcare which is not as homely, or as individualistic, as they would have experienced in the children’s services?

This particular demographic of patients faces plenty of challenges when transitioning to the complexity of adult life and, subsequently, adult responsibilities. Those individuals with complex physical and psychological health needs have additional difficulties in the road to transition. These needs would previously have been met by the same handful of individuals but, as they transition to the adult healthcare system, they will find themselves being transferred around multiple departments to provide them with the specialist care they require. 

The introduction of transitional processes should probably start early around the ages of 12 to 14 to allow for a period of discussion and acclimatisation to ensure greater confidence in services by the ages of 16 to 18. The time required depends entirely on the individual and the complexity of care required. Some young people can transfer almost immediately to adult services whereas others require years of transition to ensure the optimal manner of transfer.

Dr Jonathan Mamo

The process and team working on providing transitional services will differ from place to place. There will be qualified individuals responsible for ensuring the transition is as complete and as comprehensive as possible. There is no one definite system but each one works towards a common goal of providing a smooth and seamless “handover” of care from the Paediatrics team to Adult Health services.

All young people going through a process of transition should be provided with a written transition plan which would summarise and outline the key phases of the transition process. This should also have the names of the persons responsible for the specific aspects of the ongoing care needs. Should anyone not be sure of the process they are going through there will always be a main point of contact for clarification and explanation. 

Some services will provide site and process visits to allow young people to experience the travel to a service and the site of the service itself. In some situations, depending on availability, they may be able to meet with some of the teams who may be providing them with care in the future. 

Other aspects potentially covered could include medication as the young adult may be required to take on responsibilities including self-administration of medicines and treatments just as they would need to take on responsibilities in other areas of their lives.

The transition teams will also involve the parents or responsible adults in the transitional process as it would also take time for these responsible individuals to get to grips with the process of “letting go” of aspects of care which would previously have been their responsibilities.

The ultimate goal of any transition service is to ensure that the young person has all the skills and contacts available to ensure comfort and confidence in their transfer to adult health care services. This will feel somewhat like being “thrown” into a great unknown at time for all involved. The CQC had published a document with overviews and case studies of previous transition patients which is definitely worth a read by anyone going through this same process.

Just as the healthcare service plans to discuss transition early on, it would be ideal if families could have similar discussions at home around common themes such as;

  1. Learning the names and methods of taking medication, how much to take and asking the reason for taking the medication
  2. Seeing Health Care Professionals on their own for all or part of their clinic reviews
  3. Staying at hospital overnight on their own
  4. Monitoring hospital appointments
  5. Any questions around current and future healthcare needs
  6. How their condition may have impacts upon their lives in the future such as, for example, direct impacts on career, relationships, and intimacy.

It is essential that all people involved in the care of the young person, including the young person, should continue to ask questions around their care and to raise concerns with the relevant adult teams to ensure the best care going forward.

  • Dr Jonathan Mamo is a Consultant in Neurorehabilitation at Renovo Care South Newton. He is  also the Clinical Lead and Consultant for the Royal Berkshire Hospitals NHS Foundation Trust, Training Program Director for Health Education England Thames Valley and Clinical Panel Member for the Individual Funding Request Board for NHSE.

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Insight

‘Better psychological support needed for frontline healthcare workers’

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Frontline healthcare workers need a range of ‘flexible’, ‘easily accessible’ and ‘consistent’ psychological support to overcome the significant mental health burden resulting from the COVID-19 pandemic. 

A team of psychiatrists and psychologists, who formed the Covid Trauma Response Working Group, say there needs to be an increase in mental health awareness training for all staff in health and social care settings, supported by more assertive outreach to identify those most in need.

In addition, more sustained funding is needed for psychological support services – not just during crises – and equity of access to support needs to be ensured between different teams, services and localities, across the entire health and social care sector.

Dr Jo Billings, associate professor at UCL Division of Psychiatry, who led the study, said: “In the UK, it has been estimated that 45 to 58 per cent of the frontline health and social care workforce met criteria for clinically significant levels of anxiety, depression and/or PTSD shortly following the first wave of the pandemic.

“This is amongst a workforce already under considerable strain pre-COVID-19, as evidenced by the growing incidence of stress, burnout, depression, drug and alcohol dependence and suicide across all groups of health professionals, worldwide.

“The need to support the mental health of frontline staff during Covid-19 has been recognised, however this pandemic has also highlighted a paucity of research on the mental health needs of frontline health and social care workers, and a lack of evidence-based guidance about what psychosocial support might be most effective in helping them.”

For the in-depth qualitative interview study, 25 frontline staff (17 female, eight male) from a range of professions, services and localities – but who all worked directly with Covid-19 patients – were interviewed between June 1st and July 23rd, 2020.

Health and social care workers were asked to describe their experiences and views about psychosocial support during the pandemic.

Support from psychological services, when available, was largely valued, and those who had accessed them, or knew others who had, spoke positively about them. However, there appeared to be large disparities in what was available and significant barriers to access.

Many described service provision as confusing and poorly communicated, leading to a lack of awareness about services available. It was also described as inflexible with some services only available Monday to Friday in working hours, which did not correspond to the shift patterns that most staff worked during the pandemic. 

Further, many said they were too busy to access support services during the available times.

The interviews revealed there were ‘striking inconsistencies’ in the provision of mental health support across healthcare services, noted by those who moved between locations and specialties. 

There were particular barriers to access for staff who were not employed by the NHS, restricting access to many NHS based services for social care staff and agency staff not on NHS contracts.

Participants also referenced an ongoing reluctance and stigma, summed up by Nathan, a junior doctor: “The problem with healthcare is that mental health is slightly stigmatised in healthcare workers and people don’t want to admit that there is a problem…they stress a culture of resilience and I don’t think anyone wants to be seen as being unable to cope with anything.”

Dr Billings, who is also a consultant clinical psychologist, said: “Significant steps need to be urgently taken to improve the psychological wellbeing and morale of the UK health and social care workforce and to ensure that the services they deliver to the UK population are sustainable, during the COVID-19 pandemic and beyond.

“Resources for support need to be made consistently available, and easily accessible to all staff. 

“However, systemic and cultural barriers to access need to be addressed to ensure that accessing such resources is not inadvertently stigmatising. 

“Access to resources also needs to be equitable, within different teams and localities and across the health and social care workforce.”

Other recommendations put forward by the group included staff having ‘protected time’ during work to access wellbeing and psychological services; staff who are redeployed between teams need additional support; role modelling by senior staff and culture change are needed to increase willingness to talk; and a flexible combination of peer, organisational and professional support, is most likely to be acceptable and effective.

Co-author, Dr Michael Bloomfield, UCL Division of Psychiatry and consultant NHS psychiatrist, added: “The results of this study show that a ‘one-size fits all’ approach to providing support is unlikely to be helpful. Nevertheless, these systems of support need to be coherent, consistently communicated and easily accessible.”

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