Studying, caring, and mental health: The benefits of caring

For seven days I have put out short commentaries on how being a carer can affect a student’s mental health through external and internal obstacles. Although passionate about the subject, I hope that readers haven’t mistaken it for a general depression with my situation.

At the start of the blog series I discussed how good mental health means: ‘being able to achieve our goals without mental obstacles and to do so happy with your situation in life’. Poor mental health manifests itself in common mental illnesses. These, much like physical illness are nothing to be ashamed of and do not reflect on your character. Unfortunately, cultural perceptions of mental illness don’t encourage this factual interpretation of illness. Cultural interpretations of illness may associate illness with character judgements, suspiciously close to biblical associations of disease with sin.

I think that the damage to my mental health over the years is analogous to that of the physical damage to the health of a skateboarder or rugby player – I’ve taken some bad knocks but at least I got some exercise. Although my partner and I have had hard times over the last few years I am thankful for how lucky we have been in many ways. I am a lucky person. I am happy, healthy and have the luxury of being able to pursue my dream career. I have energy, resources, and friends, which have allowed me to achieve my personal goals. Carers have challenges that are recognised this carers week, but many of the people they care for do not have a week devoted to them. They suffer without celebration.

“Most commonly, participants identified that studying gave them a space to do something ‘for themselves’, and an identity outside of caring. The next most common benefits identified were the ability to gain life skills (and in the case of young carers, this was associated with independence) and the sense of accomplishment that came with achieving their goals.”[1]

Despite the challenges, there are benefits to caring. I have gained experience and skills by needing to be an understanding and communicative partner. It would be cruel to say that I wouldn’t trade the last six years for ones where my partner didn’t have to suffer, but I that does not mean I regret them. I believe that shared experiences are the foundation of all good relationships, my partner and I have plenty of those. Challenge, obstacles, and pain are catalysts for personal growth. Which is a lot easier to see when you have your health. Having my eyes opened to the difficulties faced by so many individuals has been personally enriching. In another life, had I not studied at York and met my partner, I could have been a very bland person indeed.

In the conversation I used to introduce the first blog, with the Newcastle staff member, I later went on to discuss how the most difficult conversations about caring were with people who had never experienced capricious personal tragedy. People who do not understand that you can play the game doing everything right and still lose. People who believe that what separates the winners and losers is hard work. People who believe that they are where they are through personal excellence rather than chance. Such people never get this until it happens to them and some of them will never gain the experience. Never needing to develop resilience is not an advantage in life.

Perspective is one of the great advantages of caring, you are forced to reevaluate your priorities. This thoughtfulness and compassion should be something to cultivate at universities. Unfortunately for many, that life experience occurs at a far too young age. I was spared from this until my mid-twenties, I got to have an extended childhood.

Caring for another should not limit the prospects of the carer. In a perfect world, children should never have to be the responsible adults for their parents or siblings, but they are. If carers are to reap the benefits of learning, as educators and administrators, we need to make informed decisions:

What will we do when a young carer knocks on the doors of our learned institution and asks, with real grit, for an equal opportunity for education?

How will we support carers and the sick?

What positive strategies should we implement for carer mental health?

 How many more carers are we willing to let down?


[1] NUS (2013), Learning with Care, Experiences of Student Carers in the UK (NUS)

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Its important to remember in all of this that my partner is still a complex person with her own drives and wants. She looks after me too, and she drives change and keeps things new in our relationship despite chronic ill health. She is not a passive party, despite my efforts to keep her out of these blogs. We built the computer I’m writing this on together. Her illness does not need to define her or me, unless we let it.

Studying, caring, and mental health: Unpredicatable disruptions

Going through the rigamarole of my partners benefits claims, I have often been pointedly asked to describe the assistance I provide my partner. I hate this question because it so often makes me feel like a fraud. My partner and I have been playing the balancing act around her condition for six years now. We have a better idea of what works and what doesn’t. With luck, I mostly spend my time at home doing what housewives have been doing for time immemorial. Cooking, washing, cleaning, handling the finances, the legal documents, the insurance, doing the shopping, making up tea or hot water bottles, fetching things. I can handle that all fine, though it does take up considerable time.

That wasn’t always the case and doesn’t describe what I do when my partners health deteriorates. I can honestly say that my most taxing periods as a carer, when I really needed help, were in those chaotic fluctuations of my partners health, benefits, or energy. Those events are not going away, they will continue to be regular but unpredictable disruptions to my research and mental health. When they occur, I have to priorities my partner’s and my health. However, they are not the kind of thing you can easily claim mitigating circumstances for, for assessment purposes. That when I want the most sympathy and compassion from my university, when I am in my most vulnerable situation. Unfortunately, the bureaucratic cogs of learned institutions have little space for things that don’t fit into simple boxes.

This kind of thing may not be a problem for some carers, but for me it has hugely impacted my mental health. On their own, these events are difficult, but their regular occurrence for six years has seriously impacted me. Many of my worst survival strategies, of pushing things down, of denying time for self-care, of putting my partners health above my own, developed in times where that was all I could do to keep us going. They probably kept us from financial breakdown and may have kept my partner from potential harm. But the emotional strain caused by these types of events can be sizable obstacles to myself and other carers achieving good mental health.

If you meet me on most days I am probably doing fine. The pace of change in my partners condition has likely meant that there has been no noticeable change over the last few months and no expectation of dramatic change for months to come. Whatever is bothering me is far more likely to be due to work than home life. In fact, one the things I’ve come to understand is that it is the usual PhD woes cause most of my stress and worry. But, regular caring responsibilities at home mean that I don’t get an opportunity to decompress.

Some of the days I’ll be in a much worse state. I won’t have slept properly for some time, I’d be paranoid about how caring is affecting my work, I’ll be worrying about how everyone is judging my work patterns. For some time, I will have been in a pattern of caring at home for 3-5 hours in the morning, evening, and the middle of the night, and then working at university.  I’ll be wrecked for a week or so. These times are unpredictable, I’m not in control of when I need to step-up my caring. It’s these crunch points that I think are the hardest things to resolve with university administrative procedures because they are not structured or controlled. During them I am feeling deeply ashamed about failing to control and compartmentalise. I am just trying to get through the week without seriously messing up. However, my predominant feeling at this time is fear of how the university will react because there are no assurances from the institution that they will be understanding.

In semi-structured interviews with student carers, a third reported negative experiences of institutional support. This was either passively, through lack of institutional interest, or actively as carers were treated poorly after disclosing their caring responsibilities. Support policies failed from lack of appropriate balance, either being too poorly structured to effect proper support, or too rigid to help students when it mattered most[1].

Everything I have outlined in the past few blogs has related in passing to mental health. But it is the combination of these challenges, occurring unpredictably over the course of a student’s studies, that affects student mental health. Institutions may struggle to fully prevent these events occurring. That’s why the most important thing that higher education providers can give to carers is their compassion. A certain willingness is needed –  to be flexible, to not judge, to step in and help –  to support student carers. For me at Newcastle that compassion comes in the form of an excellent supervisor, and excellent admin staff. Without the people of the institution I would have failed to get this far. However, I feel that I am really walking on eggshells, and that the compassion of individuals would count for little against the HR machine if it focused in on me. What I’m saying is, if universities don’t produce guidelines on this from the top down, unlucky students will get steamrolled by uncaring supervisors and staff. Those students might still have produced good research, got degrees, and contributed to the university’s prestige. They just need to feel safe and be facilitated.

Tomorrow’s blog is a nice concluding blog on the advantages of being a student carer. Well done to you reader for making it this far and thank you for celebrating carers week with me.

[1] NUS (2013), Learning with Care, Experiences of Student Carers in the UK (NUS)

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I have always loved Desconsol and other of Llimona’s work that I have seen in Barcelona and Montserrat though I have not always known the sculptor. We took this photo together, before she realised just how ill she was. I remember being frustrated at her for not feeling up to doing more each day. I shouldn’t have been, those still ended up being some of my fondest memories.

Studying, caring, and mental health: Financial obstacles to studying while caring

Previous blogs for carers week 2019 have discussed how the likelihood of caring can be affected by socio-economic factors. Although the literature disagrees about the degree to which these factors affect caring likelihood and the degree to which illness and addiction strike evenly across demographic groups[1] (especially for older carers); what is clear is that two thirds of student carers worry about making ends meet[2].

This section of the blog is really very difficult to talk about because caring situations vary so widely. Social and governmental expectations for carers to provide financial support for those they care for vary too. If you care for your sister who is unable to work, the government does not expect you to provide for them financially. However, if you fall in love with someone who is disabled and want to move forward in the relationship by moving in with them, the government may expect you to take on their bills, rent, medicine and leisure costs, even if all other details of the situation are the same. There is a spectrum of opinions on this matter and as much as it is difficult for me to hear, I believe that reasonable people can differ in their views on this matter.

The person you care for may have access to a variety of income sources; employment, pensions, state benefits, family support, and more can provide relief. So much of the caring experience involves complex legal, administrative, and bureaucratic exercises that mean I can’t speak to the difficulties carers face at large. I do know my experience, and for the last four years I don’t think a month has gone by where I didn’t worry about money. For many carers, years and years of financial worrying is a great strain on their mental health and can lead to the development of survival strategies that negatively impact long term mental health. I am well placed in life, and due to family I have never worried about whether or not I could keep the lights on or eat next month. But without them I could not afford to be a student and care for my partner.

Without intervention and loans at crucial moments and irregular but generous gifts from both my family and my partner’s, I could not be a student carer. I don’t begrudge this situation. With noted vested interest, I obviously do not think that the comparatively wealthy should be shamed for being able to support those they care about, providing they pay appropriate taxes. It is from this lucky vantage point that I am able to be here to talk about me and my partner’s situation.

My partner has fallen through every crack in the Department of Work and Pensions floorboards, and the safety nets provided conveniently fail to cover the exact situation we find ourselves in. Of the benefits she is eligible for, for being chronically ill and certified as long-term unfit to work (a state the DWP has found cause to deny to individuals who have promptly died of heart failure when forced to return to work[3]), my partner is rendered ineligible to receive them because of my student stipend (which has been around £14,700 this year, going up to £15,000 next year – tax free); except for PIP, which my partner has had revoked and is appealing (73% of PIP appellants are successful often having their rate of benefit increased after assessment by a qualified, independent panel[4] but 40% of those whose claims are removed do not appeal due to the stress of appeals process[5], which tells you all you need to know about the ethos of the DWP). As such my partner is financially dependent on me. That stipend pays for both of us. We have pursued all possible options, there are no more safety nets for us. Full-time students become ineligible for carer’s allowance and governmental assistance for carers is only accessible at undergraduate level. My university has no discretionary funds for carers, hardship funds require students to have spent all savings and have nowhere else to turn.

Student carers are around twice as likely to apply for discretionary funds as non-carers and are less likely to receive financial support from families[2].

I am not wrecking myself financially to get a PhD when I could be paid more with better quality of life somewhere else. If I got into dire financial straits, I would not be waiting for the opinion of a panel to decide on hardship funding. I’d be gone way before that, doing what I’ve done for the last five years – which is whatever it takes to look after my partner. I’m not really asking you to think about what a fair benefits system is for the chronically ill. We can’t control the whims of government there; austerity hurts academia too. I’m asking what you think is reasonable for a PhD student, or any student, to live on.

Student carers will have a variety of financial situations, not all will need as much to get by. But do you want students to just get by? Do you think students without safety nets will be able to study at your institution without help? What are you willing to do for these individuals who contribute on average £19,000 per year each to the UK economy[6]? Are you happy that student carers at your institution, because of their compassion for another person, are more likely to struggle during their studies? How do you think this affects the research quality of your institution?

Reasonable people can disagree about benefits and funding. But at a point it feels like people who are apathetic or disagree with discretionary funding for carers from universities, colleges, funding bodies and learned societies are just mean-spirited. People like me will always find a way to study. That’s what a privilege is.

This funding is needed for disrupting that status quo, attracting the best and most compassionate talent, and changing the academic profile from the classic “pale, male, and stale”. Maybe I’d spend it on a single slice of Jesmond avocado toast, but someone else needs it for food, sanitary products, and medicine. Only they’re not able to be here and say that, they left years ago when we first let them down. All you’ve got left is another middle class, white guy.

[1] Wanless, Derek (2006) Securing Good Care for Older People: Taking a Long-term View, Kings Fund

[2] NUS (2013), Learning with Care, Experiences of Student Carers in the UK

[3] https://www.independent.co.uk/news/uk/home-news/man-died-job-centre-fit-to-work-dwp-government-assessment-benefits-death-a7537111.html

[4] https://www.benefitsandwork.co.uk/news/3910-pip-and-esa-appeal-success-at-highest-rate-ever

[5] https://www.disabilityrightsuk.org/news/2018/september/4-out-10-pip-claimants-do-not-appeal-it-would-be-too-stressful

[6]Carers UK & University of Leeds (2015),Valuing Carers

don’t stop caring on the weekend, and neither does carers week 2019. Saturday’s blog is on the chaotic disruptions to carer mental health and what higher education providers can do about them. Don’t worry, I’ll have a happy one on Sunday as a reward.

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We bought a flat. By borrowing money from family, to be paid back when it’s sold, we reduced our outgoings by £3k pa, so we were no longer haemorrhaging money. I’m embarrassed about it in a lot of ways. Another in my situation would have had to suspend their studies for lack of family affluence.

 

Studying, caring, and mental health: Caring and socialising

Today is the fourth blog in a series of blogs I am writing for Carer’s Week 2019 on Studying, caring and mental health.

Social support networks become essential to maintaining good mental health during your studies. Caring can lead to a number of dramatic, stressful, or concerning events with the person you are caring for. The illness or addiction of the cared-for person may result in these events as the fluctuation of their physical and mental health fluctuates over weeks and months. However, the emotional support of the caree can also trigger them and be extremely difficult for carers to deal with, especially as the carer realises that they are ultimately not in control of the health of the cared-for person. They want to help but often cannot fix problems, only assuage pain or discomfort.

Carers need respite from their caring responsibilities, they need to be able to feel valued by people outside of their caring situation, and they need trusted confidants who they can talk to about these challenges. University is often a time that young adults can explore new social roles and make friends for life. These friends frequently become necessary to academic success in the form of revision groups, group projects, and research collaborators. Although young student carers generally do a better job of socialising than their older student counterparts[1], there are several stumbling blocks that can prevent student carers building and maintaining the strong support network required to achieve good mental health. In turn there is a risk that difficulty in socialising can lead to resentment against the cared-for person, or towards other students who carers may feel are moving on without them. Let’s talk about what they are and how higher education providers can help.

61% of all UK carers report cutting back on seeing their friends and family[2]

Broaching the topic of caring can be challenging. The topic is deeply personal and requires trust between the carer and a colleague or friend. The carer may be concerned about how the cared-for person will respond to having their illness exposed to third-parties in a way that is out of their direct control. Although carers never need to disclose their personal situation to friends, failing to do so may lead to complicated webs of half-truths that adds stress.

Whether or not friends are informed of caring responsibilities, those responsibilities may still impact on socialising. Frequently this can involve leaving social events early, or not attending. I have often felt unable to attend events that I would have liked to go to because instead I chose to go home and cook my partner a warm, healthy meal. Carers can become extremely important keystones in the support network of the cared-for person, leading to complex feelings of guilt associated with leaving the caree alone for the evening, or for leaving them out of social situations (even if they are aware of them and is happy for the carer to go). Over time this can lead to carers withdrawing from, or being left behind by, their social groups. If social groups are unaware of the caring responsibilities, they may misconstrue the motives of the carer in withdrawing from social life.

Luckily for carers there are other ways to build support networks outside of university. Family, friends made before becoming a carer, other carers or cared-for individuals, or hobbyists who enjoy activities that do not conflict with caring responsibilities are all available to carers who are willing and able to seek them out. For me, this has taken the form of a board games friends that visits us most weeks. As my partner has limited mobility this has enabled both of us to make friends while remaining in a comfortable setting. These are great ways of building a support network, but a robust support network is strengthened by other students who can help carers through their studies and provide networking opportunities for carers in their career.

Finally, it is worth mentioning that although a vast majority of people are kind and understanding, everyone has experienced situations where discussing being a carer has brought out the worst in a conversational partner. The stigma surrounding addiction, ‘benefit cheats’, and ‘the lazy sick’ certainly exist, even in a traditionally progressive university setting. These can be exacerbated by racist, misogynistic, or class prejudices which are very much not expunged from academic environments – although political correctness has partially succeeded in driving it into dark corners. I have had experiences with academics who insulted my partner to my face in a semi-social setting. I am sure they saw their mocking of the chronically ill as a joke.

I suppose that people sometimes see me, a straight, white, middle class man, as a safe confidant of closeted bigotry. When directed at others these types of jokes might have a more obviously vicious intent and maybe others are less likely to experience them because of this. You’d have to ask them. I can certainly see student carers feeling vulnerable about disclosing addiction or illness when making friendships if they want to avoid playing into stereotypes.

Higher education providers need to be cognisant of how social isolation removes a safety net for student carers. Without a social support network, student carer mental health may suffer more from the usual difficulties of student life. There are legitimate challenges around attending social events and socialising in general.

If their mental health deteriorates seriously, student carers may lack the support network needed to stabilise them and to then promote recovery. As such, the support universities provide needs to be active, rather than just setting up ‘carer meet and greets’, and greater attention is needed in establishing pathways to socialising that are long-term and fit for purpose.

Tomorrow I discuss financial troubles for student carers.

 

[1] NUS (2013), Learning with Care, Experiences of Student Carers in the UK

[2] Carers UK (2018) State of caring report 2018

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The year I returned from my industrial placement to complete my undergraduate degree was the year I became a carer. At that point most of my cohort had graduated. Moving on, degree to degree to degree, further and further north, we isolated ourselves from friend and family. My partner had fewer avenues to make new connections. This was taken in that last year, the first year; I don’t really remember why or where, but I remember laughing.

Studying, caring, and mental health: Balancing caring for another and for yourself

The Jesuits place great focus of being “a man for others”. Though I now lack belief or religion, the stories of my childhood made a profound impact on my worldview. The version of Christianity I was taught placed great value in a leader of men humbling himself to wash the feet of those who he loved. A good life is lived in the service of others. I can’t help but feel that long-entrenched and complicated feelings surrounding service, care, and love have influenced how and why I am a carer. Though I’ll admit that the messianic comparison doesn’t suggest I learnt much about being self-effacing. I really don’t know how it is for everyone else; but for me, having so much tied up in the health of another person makes it harder to prioritise my own self-care.

It is a cruel injustice that my partner is chronically ill. When someone you love suffers an unlucky accident like that you can end up investing all kinds of feelings and actions into trying to right that wrong. These feelings can complicate your own successes in life. A widening distance between what you have had the opportunity to achieve and the track they had been told to expect in life can lead to complicated feelings of guilt. It is understandable for both of you to mourn the loss of opportunity that develops each day that you are unable to share experiences together or live separately successful lives. I have had the opportunity to do so much in my degrees: to travel, present, publish, discover, and make friends for life. It can feel like the least I can do to redress the inbalance of the situation is make sacrifices for my partner. Additionally, poor mental health habits can develop that I am able to disguise myself as the sacrifices of care. It is very tricky at that point to disentangle what is necessary to caring for another and what is a coping strategy that has outgrown its usefulness.

I don’t believe this is a unique problem. I think student carers are very bad at this, mostly because they are often very young and are still developing their view of the world. This impacts a student’s study because carers may legitimately have less time to pursue opportunities for self-care that a university provides. Additionally, they may purposefully avoid those activities and tell themselves that they don’t have time for them because they are too busy at home or with their studies.

Universities have a challenge on their hand when it comes to ensuring that student carers are looking after themselves. Many people who care for another person don’t identify as carers, those that do may struggle to access mental health resources, and those resources are not tailored to the experiences of carers. That was what I found, and after a few workshops on self-resilience and coping with stress, I realised that these courses offered nothing useful for me. I was too far into it by that point. Carer’s groups outside of the university were helpful, but you can’t effectively share your difficulties of study with people that haven’t experience being a student carer in higher education.

36% of student carers feel able to balance work, study, and relationships, vs. 53% of students without caring responsibilities[1].

Although universities need to understand the duty of care they have to carers (legally and morally), part of that is helping carers develop self-sufficiency through self-care. Carers need to allow themselves to self-care or they will fail in their goal to become more effective carers. Accessing the mental health team at Newcastle was the best thing for me. They were used to the usual challenges that students face but could synthesise that knowledge with their understanding of relationships and caring responsibilities. I would recommend this approach to other students even if you don’t think that you have a mental health illness.

This week for carer’s week 2019 I have been writing a blog a day on Studying, caring, and mental health. Tomorrow I will be talking about caring and socialising in higher education.

[1] NUS (2015) Learning with care: Experiences of student carers in the UK

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I took this photo the last time I went diving. Diving and diver training used to be such a large part of my life. Being under the sea is so calming and tranquil, refreashing and focusing. I haven’t found the time or money to go diving since starting my PhD. I am not good at prioritiesing self-care.

Studying, caring, and mental health: Accessing Higher Education

For carer’s week this week I am writing a series of blogs about being a student carer. Today I want to discuss access to higher education for carers.

As much as we might like to deny it, access to higher education is not a level playing field. Differences in the quality of education a child receives, time and resources for extra-curricular activities, and role models amongst family and family friends who are in or adjacent to academia (academic capital) are not evenly divided amongst prospective students. We have no reason to believe these things line up with natural disposition to academic success. Intersections between who is wealthy, the postcode lottery, what class people are, what race or gender they are, or their disabilities or illnesses  they have can often interact with the likelihood of a prospective student also being a carer. This is because families who have been lucky in the draw of life are better equipped to deal with illness, addiction, or misfortune than those who were less lucky. Child carers (who most often are carers for family members) face that first and highest obstacle to academic success: accessing higher education.

At this point, it must be stressed that I cannot really talk on these matters from experience. Before becoming a carer there were literally no obstacles for me to trip over on my way to academic success, apart from stumbling over myself. I became a carer in the final year of my undergraduate degree. I am not at the top of the privilege food chain, but as a Jesuit educated, Kingston schoolboy, I had a lot going my way when I applied for university.  In talking to other carers, I have learnt just how lucky I was in my situation. I even think a lot of people with less privilege than me would also be amazed at the experience that many young adult carers have had to deal with in university. Some of the more outrageous experiences that I have heard about involved high-flying researchers telling students that there was no excuse for handing in work late, after the carer had recently checked out a parent from hospital for a serious illness. Some of these people have been checking family members out of hospital, signing off as the responsible party, since they were 8 or younger. The power dynamic between a lecturer with too little time or patience, and a student in a difficult situation trying to pull themselves up by their bootstraps is very imbalanced. However, lecturers who may have faced comparatively few obstacles in their path to success can still feel entitled to judge students prima face without compassion. Their academic success may protect them from their mistakes as an educator, and it is vulnerable students who suffer for it.

For me, the darkest side of this whole story of caring in higher education revolves around child carers. Not because of their situation, but because of their clear potential and how we let them down. These are individuals that have demonstrated extreme mental fortitude, generosity of spirit, compassion, and public service. As children. These are the people that I want to be the next generation of leaders, yet they are the people that the academic system routinely fails. We have no way of acknowledging their skillset in a UCAS application. We struggle to account for their progress through undergrad while caring for a relative or adapting to life apart from them. And worst of all, we are woefully, woefully underprepared as a culture of teachers and support staff for ensuring their success. This is where the problem intersects with mental health. Student carers may feel challenged to keep up with work, and this can lead to stress, depression, or negative self-image. We are allowing student carers to tell themselves that they aren’t cut out for study, when this couldn’t be further from the truth. By failing to allow for the unique challenges faced by student carers, by not identifying carers or encouraging carers to realise that their challenges may be greater than their fellow students, we discourage them from pursuing higher education. We tell them not to try. How can we do better here? How can we encourage carers to university? And most importantly, when they are there, can we promise not to let them down?

More than half of student carers have seriously considered leaving their course (56% vs. 39% in the general student population)[1].

I know I have focused on my identity in this piece, which some of you may have found off-putting. But I am writing all of this, not because my race, class, gender, sexuality, or good-health give me a special vantage point to comment on the student carer experience. They don’t. I’m writing this because I struggle with balancing student life and mental health. If I do that with all my advantages, what does that say about the experiences of people facing other everyday challenges too?

Tomorrow, I’m going to talk about the balance of caring for another and self-care.

[1] NUS (2015) Learning with care: Experiences of student carers in the UK

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The year I became a carer, I learnt to script and wrote this. The stress of my dissertation made it very difficult to realise that I was also taking on new challenges at home. Work at Uni, work at home. It’s all tied up together and weaved into my feeling of self-worth.

Studying, caring, and mental Health: What’s the Problem?

In a recent conversation concerning student carers at Newcastle University, a staff member and I discussed the usefulness of mental health wellbeing programs offered through the university. Activities such as mindfulness sessions, meditation, coping with stress, organisational skills, dealing with procrastination etc. are offered at my institution. I hope these sessions are of use to my fellow students. However, I told my conversational partner that I didn’t feel these sessions were really fit for purpose when it comes to students dealing with an intersection of postgraduate stress and another stressful challenges, such as caring. This is not about an issue with my institution, I think something different needs to be provided for carers, and perhaps other students too across the board.  Student carers may struggle with balancing the health of another and their own self-care, I don’t think I have any answers, but I do think we need to talk about the problem.

It’s certainly worth noting that this is based upon my own experience which may be better, or worse, or just different from other student carers. Additionally, it is couched in a setting with a distinct amount of privilege, which acts as a large safety net made up of family, an assumption of belonging, and comparative wealth. That safety net means that I have gone through difficult times and, with helping hands, have been able to pick myself up, dust myself off and get moving again where others would have been unable to do so, or lacked the necessary support network, academic, or financial capital.

Achieving good mental health is a goal that many of us struggle with. Mental health challenges can prevent us from achieving our best, working productively, and being happy with our work and our situation in life. With a fifth of students in the UK experiencing common mental health disorders[1] and 87% of carers stating that it impacts on their mental health[2], student carers face a unique cocktail of mental health challenges. In one of the few critical studies of student carers in the UK, the NUS found that 15% of their 424 surveyed carers experienced mental health challenges[3].  Part of me doesn’t know what to do with that figure; are carers galvanised against mental health challenges and so report marginally lower incidence of mental health difficulty, or is higher education actively or passively selective against carers with mental health challenges? Either way, both caring and studying have noted impacts on mental health, but when they intersect, difficulties arise that are separate from those experienced by students or by carers alone.

In a series of blogs this carers week I will be writing about what these difficulties are, and how they affect student carers. If you are able to commit yourself to a few hundred words each day, I’d love if you could follow along.

Tomorrow, I’ll discuss accessing higher education.

[1] https://epi.org.uk/publications-and-research/prevalence-of-mental-health-issues-within-the-student-aged-population/

[2] Carers UK (2012) In Sickness and In Health – A Survey of 3,400 UK carers about their health and well-being

[3] NUS (2015) Learning with care: Experiences of student carers in the UK

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I buried a lot of things in my PhD work, then they rotted and I dug them up an analysed them. This is like that.

Supporting carers in their careers

In the June edition of the British Ecological Society Bulletin The Niche, an article appeared that I wrote about student carers in the UK.  The BES is a huge network of people who work in the environmental sector in the UK, but also around the world, it’s a network of peers that I hope to move into in my career. I’m very happy to have appeared within it, but also a little daunted given the nature of the article. I have reproduced the article here, followed by a discussion about it.


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Three in five of us will be carers at some point in our lives[1]. With so many of us facing this, how can we ensure that ecologists receive the necessary support when care work becomes a part of their life?

If you look after or support someone, despite it not being your job to do so, or if you look after a child for some other reason than their age, you are likely a carer[2]. Carers save an estimated £132 billion for the UK economy in unpaid work, averaging out at over £19,000 per carer per year, or around £2000 for each person in the UK[3].  These individuals should be facilitated to pursue the careers that they otherwise would have done had they not had additional responsibilities. You may not have thought about it, but at some point in your life you may decide to look after a dying relative, your significant other may become injured or ill, or you might help a close friend or housemate struggle to overcome addiction. You may already have looked after someone in this way or are doing so now, and you still might not think of yourself as a carer. Carers in all careers can find it difficult to balance work and home responsibilities, or dedicate enough time to career progression, ecologists are no different. Unsupported carers are at high risk of dropping out of careers that they otherwise excel at and are passionate about.

Care responsibilities can profoundly impact work life, health, and mental wellbeing. Ecologists who are carers  face unique challenges that may require them to work flexibly, take time off, or go extra lengths to financially support an extra person on a single salary. Importantly, caring responsibilities can impact work or career progression. This is especially clear for student carers and early-career ecologists with caring responsibilities. An estimated 3-6% of students are carers[4], and the difficulties that they face make them around four times as likely to drop out of their studies as their peers[5]. For ecologists at the early stages their careers, they are having to make choices about whether they can afford to pursue their passion for ecology, whether the sacrifices they need to make to do so will negatively impact on the health of a loved one, or whether a family member’s quality of life will be affected by a field season away from home. Reliance on healthcare and benefit systems can limit the mobility of ecologists who are being told that in order to progress they need to be willing to relocate within or between countries.

I am a British PhD student and have been a carer for nearly five years. I care for a partner with chronic, debilitating illness that prevents them from working. My partner relies upon me physically, to do the work around the home that they cannot do, and emotionally, to provide the support that would normally be gained from a support network that is difficult to build while ill. My experience of being a student carer has covered all stages of my university education: undergraduate, masters, and now my PhD. Each transition raised new dilemmas in balancing workload, home responsibilities, and both our finances. For example, choosing to undertake a PhD and take on a stipend made my partner ineligible for housing or sickness related benefits and required us to rely on a single PhD stipend for all of our living expenses. Caring has affected the choices I made concerning my early career development.

One such example occurred during my masters degree while my partner and I were still eligible for benefits. Then, working as a demonstrator in university practical classes actually cost us money and additional time. Every month I would have to meet with the Department of Work and Pensions to supply the hours worked and they would remove the earnings from my partner’s benefits. In effect, demonstrating during my masters moved money from my ill partner to me without improving our financial situation. I also had to take time off during my studies and pay transport costs to attend the meeting. I offered to do demonstrating work unpaid so that I could still gain the experience without the hassle, but this was not allowed. As a result I rarely demonstrated.

At the postgraduate level, the financial support received by undergraduates with adult dependents disappears and universities rarely step up to replace it. Additionally, full-time students become ineligible for carers allowance benefits, irrespective of how much care they provide. Though university hardship funds may be available they normally require the student to be in the state of financial crisis. I would expect that for many students in that situation they would probably withdraw from their studies and seek more gainful employment. I certainly would consider it, I can’t risk my partner’s health and wellbeing by getting into dire financial straits. There are no more pots of money at a national level, there is rarely a support framework within the university. In short, postgraduate carers are on their own.

This sound like a national problem, why am I bringing this to the attention of The Niche’s readers?

 “Nurturing, fostering, and developing talent from all sectors of society are core to our education work alongside career help and advice” – Hazel Normal (‘What’s the point of the British Ecological Society,’ The Niche 49:4 p6)

I believe carers are no less deserving of education and success than their colleagues, but they cannot succeed without support and help from all of us.  Carers are no less capable than their peers. If we want the best work to be produced by members of the BES, we better step up to the challenges of making sure that talented individuals are facilitated to do their best despite barriers raised against them. Put simply, if my partner and I didn’t have the financial support provided by our family I would have been unable to afford to continue in higher education. We also benefited greatly from their advice, patience, and emotional support. The BES could support career progression of early career ecologists directly with funding, or indirectly through its policy teams and members by raising these issues to at a governmental, university and/or industry level. You shouldn’t need to come from a wealthy, supportive family to get by as a PhD carer. But for certain carers, I can’t see how it could be any other way.

Carers need to come together to share advice about how to survive in the highly political world of academia and in the demanding workplaces of ecologists. Other ecologists could be more aware of the additional responsibilities of carers and think about how they can support them in big or small ways. This is why I have suggested the formation of a carers’ group at the next BES Annual Meeting. If you are a carer, or unexpectedly become one, then this group is a place for you to meet with ecologists with experience balancing care at home and work. If you have had to do so in the past, perhaps during a formative stage of your early career, then you may be able to offer advice and encouragement to others. If we pull together then the BES as a whole can better understand the needs of their membership, identify what obstacles they are facing in their journeys to produce excellent research, and make plans for lifting all ecologists onto an even footing.

[1] https://carers.org/key-facts-about-carers-and-people-they-care

[2] https://www.england.nhs.uk/commissioning/comm-carers/carers/

[3] Carers UK & University of Leeds (2015),Valuing Carers

[4] NUS (2013), Learning with Care, Experiences of Student Carers in the UK (NUS)

[5] Kettell, Lynne (2018), Young adult carers in higher education: the motivations, barriers and challenges involved – a UK study, Journal of Further and Higher Education, DOI: 10.1080/0309877X.2018.1515427


Thanks for reading my article.

I wrote this following a discussion with the head of external affairs at the BES, in December 2018 at the BES annual meeting. I wanted to ask this person about the possibility of doing more to connect carers within the organisation. Mostly this was because I have often found it hard to achieve work/life balance in my PhD. I was having a hard time talking to myself about what I perceived as personal failings in this area. If I was struggling with this, other carers probably felt the same way and it would be good to have someone to talk to about it with, someone who could be a role model for me in my industry, and perhaps, someone I could help with my experiences. The staff member agreed and suggested an event for the next annual meeting and an article for the bulletin to publicise the issue. 

Melanie Edgar (@agroecofarm), who’s article on sickness during PhDs had just appeared in the inaugural issue of The Niche, was the first person I wanted to talk to about it. She offered some really great advice, I also talked to my supervisor about it, the Young Adult Care Worker at Newcastle Carers who has helped me these last few years, and, obviously, my partner.

One of the hardest things to convey has been how difficult it can be to identify as the carer of someone who you are meant to have a balanced, equal relationship with. Sometimes, when talking about being a carer  in earshot of my partner, I worry about how it makes her feel. If I am a carer, she is a caree. When I recognise the challenges of my position, I remind her of her situation. When I receive support from Newcastle Carers, or talk to someone about my problems,  or make headway in any of these areas she is proud. But it is infuriating for me, and devastating for her, that for all of the failing of the support for carers in the UK, we are still treated better by the system than those who are actually sick.

Day to day I worry about how my work/life balance affects my results, my PhD, my career. But my partner’s illness reminds me that these are luxurious problems to have the opportunity of dealing with. The thing that really upsets me is, that after five years of looking out for her, I still don’t know what to say when we talk about what happened to her twenties. That’s what I need help with.

African Adventure Over

11/04/16

Five days ago I returned from an African adventure, one where I was pushed to do things that I had no prior experience of doing. As I suspected, many, many things went wrong but it was exciting. Now I have returned to the UK, back to the life of data analysis and masters work. I hope you have enjoyed reading my blog as much as I enjoyed writing and living it. As I begin another urban adventure, where the guns, insects and mountains are replaced by more familiar problems of worry, stress, and work I will return to the blog and update it with more information. Everything is just a memory and a story now, even for me. The forest will soon reclaim our tracks and with it, all physical evidence that we were ever there.

I hope you have have had time to read through the blog, but if you haven’t here are the highlights:

One Stop and Home

05/04/16

Dennis and I met at The White House around 2:30, as it was too late to head to Kanyantorogo, we spent the afternoon and evening playing cards and discussing the week of back to back exams he had just experienced. We retired to Hamlet’s home, overlooking the town, to sleep.

Our drive from Kasese the next day was an experience of its own. We headed to Kasese’s taxi park in the morning, after a quick breakfast and located a 7 seater heading to Kahihi, in our direction. Dennis had correctly predicted that, although the taxi park was full of cars, they wouldn’t set off until around midday when they were full. A full taxi was one that was slightly over-packed, but not so full that they couldn’t pick up more passengers on the way, so the car we left in had around nine passengers, with Dennis and I sharing the front passenger’s seat. This worked out surprisingly well as that car was automatic and lacked a floor-mounted gear-stick, leaving us plenty of space. Dennis straddled the space where the gear-stick would have been and defended it, and our comfortable seating, when the driver tried to add more and more passengers to the front seats of the car.

Our route took us through Queen Elizabeth National Park, and I finally got to see tree-climbing lions that are found in only a few locations. The particular one we saw was lazing in a fig tree, escaping the afternoon sun. All the roads lacked tarmac and we slowly accumulated passengers until we numbered 13 or so.

Traffic officers set up a number of patrols along the way to ensure that the car was not overloaded. The only criteria the car had to meet was that the front seats must only contain two people – the driver and a passenger. The back seats were of no interest to the officers, so every now and then Dennis and the girl who shared the front seat with the driver would exit the car and hop on a boda-boda until we passed the patrol.

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From Kahihi we reached Kanyantorogo by boda-boda. I greatly enjoyed meeting Dennis’s brothers, sisters, nieces, nephews, and mother, who lived in adjacent plots. Everyone was very happy to have me and, as we shared a family meal on Saturday night, I noticed that once again I was being served chicken stew. Every meal I had shared with Ugandan families had included chicken stew and I asked Dennis how regularly they have it. I knew chicken was neither abundant nor cheap and his answer, that we were having it as my visit was a special occasion did not surprise me. I have been lucky to have had so many Ugandan families prepare this celebratory meal for my visit, but ironically it has prevented me from experiencing the day-to-day meals of my hosts.

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Among the many special memories I have from my visit, I will especially cherish one of Dennis’s mother; though she spoke no English, Dennis recounted how she had told him that she had never seen a muzungu laughing like I had. Sharing this cross-cultural meeting, that had been preceded only the week before by my visit to their family members in Kampala for Easter, was a special occasion for both them and myself, for the old and the young.

That night the rain pelted the metal roof long into the night, magnified by the space between it and the open ceilinged rooms. The rain had just reached them the day before; as usual we had brought it with us. The wet season now upon them, they were soon to begin planting crops.

The next day we just enjoyed being home. Dennis had not returned since leaving for the Rwenzori and the children were overjoyed by his return and the chance to tell their school friends that they had spent the weekend with a muzungu. After helping Dennis and his sister-in-law with a few tips on using some Microsoft software, Dennis, his brother Oscar, their friend and I headed out to the Bwindi cultural centre. We had a quick tour and then sat in the empty bar with some cold beers. The tourism season was over now and the place was deserted.

Too soon it was time to leave, I boarded the night bus back to Kampala and got back in at 5am, having only slept intermittently during the long drive. After an early morning boda-boda back to the Shine hotel I caught a little sleep and headed back to the office. Since then I have been occupying myself with things and waiting to fly home today.