Jenny Pillar had presumed open-heart surgery in the first few months of her baby’s life was the biggest challenge her family would face.

Yet, for years since then, her daughter has faced a relentless onslaught of new hurdles, owing to an underlying genetic condition.

Phrases such as ‘global developmental delay’ and ‘anxiety’ hide a multitude of complex needs and daily struggles for her and her family in Oxfordshire.

Her daughter has had good paediatric care and her parents have had helpful guidance on what to do practically in caring for her physical needs.

‘But nobody ever asked us how we were and whether we were alright and how we were coping,’ says Mrs Pillar. ‘Everything was focused on my daughter all the time.’

Mrs Pillar was an experienced therapist before her daughter was born but she has often felt overwhelmed by her role as carer: the struggle for the right support for her daughter, the strain on relationships and finances, the stress and social isolation.

‘Whatever feelings you're having, you've got nowhere to put them,’ she says.

The UK’s 5.8 million unpaid carers have been compared with a second NHS, a shadow workforce providing support worth £184bn each year, according to the Centre for Care.

They help keep millions of people out of hospital and residential care, plugging essential gaps in overburdened systems.

Yet, unpaid carers continue to be unrecognised and unsupported, and their caring duties can take a heavy toll on their own physical and mental health, their finances and ability to earn.

Despite enthusiastic policy statements supporting them, carers’ health outcomes have worsened and the number of hours of unpaid care provided has risen in the past 10 years, says Carers UK. 

According to the charity’s 2025 State of caring survey, 51 per cent of unpaid carers felt they needed more support from the NHS. Just 14 per cent said they were asked about their ability to provide care for their loved ones at hospital discharge.

A 2024 study by the University of Birmingham of parents caring for children with disabilities and long-term illness found that more than 40 per cent of these parents had considered suicide.

All this is despite a growing body of research, from cancer charities and others, that suggests better support for carers leads to better health outcomes for caregivers and cared for, including more successful hospital discharge.

Early in her career as a consultant paediatrician specialising in neurodisability, Tamsin Josty grew concerned about the lack of psychological support being offered to the family carers of her patients.

What struck her most was the ‘horrible uncertainty’ and anxiety that diagnosis brought – and her team’s inability to offer adequate support to families navigating those feelings, for lack of time and resource.

In Wales, as in so many other parts of the UK, free or low-cost counselling was not widely available.

Dr Josty advocated for a counsellor to be included in the child disability MDT (multidisciplinary team) but, at the time, ‘neither funding nor acceptance of the need for skilled one-to-one counselling support for carers was forthcoming’.

The team set up parental peer support groups for autism and for global developmental delay.

She started training as an integrative counsellor in the evenings – and eventually left the NHS to complete an MA in counselling. She now works with Counselling Carers, the not-for-profit counselling and psychotherapy service for carers, which Mrs Pillar founded after becoming convinced other carers, like her, lacked support.

Dr Josty is now even more aware of the importance of providing family carers with space and opportunity to focus on their own needs and emotions.

‘Families are often carrying unspoken, unheard, unacknowledged grief that can feel unspeakable because, “I love my child deeply but this is not what I was expecting or hoping for”.

‘For some of my paediatric patients with severe and complex needs, the parents spent so much time attending to their child's care needs, including highly time-consuming tube feeding, multiple and complex medicine routines, home physiotherapy, attending appointments, that it didn't leave much time for fun family life, or even just being a parent.’

Dr Josty makes a strong case for early emotional support – ‘right from the neonatal unit’ – and Mrs Pillar agrees. An early acknowledgement that things were going to be tough, and an opportunity to air difficult feelings, would have helped her and her husband ‘pull together’, Mrs Pillar feels.

‘One of the things that I often hear in the therapy room is: “My life would be so much easier if this person I’m looking after wasn’t here,"' says Mrs Pillar. ‘It is so hard to articulate this thought and it can be accompanied by a lot of guilt.  

‘When a counsellor is able to help a carer see that “this is exactly how lots of people in your situation naturally feel”, they're able to step out from under this chronic sense of shame and can give better care because maybe they want to be there a little bit more.’

Dr Josty feels doctors should be trained to signpost support for carers, including low- or no-cost counselling and local carers' organisations. But their roles are so time-pressured, she says, they are unlikely to enquire about carer wellbeing unless they can signpost people to support they trust.

She believes most doctors want to support family carers well but fears some may become inured to carers’ needs because too often their own well-being as clinicians is neglected.

‘Because doctors expect themselves to be superhuman and don't have that expectation that they need to be proactively looking after their mental health, it is no surprise if they are not seeing the need in parent carers,’ says Dr Josty, who also counsels healthcare professionals.    

Lord Darzi's 2024 investigation of the NHS in England called for a ‘fresh approach’ to supporting unpaid carers, treating them as ‘equal partners’ in care. NHS England acknowledges that carers’ involvement in care planning may ensure ‘more effective use of NHS resources’.

Katherine Walesby has learnt the importance of strong doctor-carer relationships the hard way.

She is a specialty trainee 7 registrar in geriatrics and general medicine, and mother to an eight-year-old who has an ultra-rare neurodevelopmental condition called AHC (alternating hemiplegia of childhood).

Among her many complex health needs which require 24-hour care, Dr Walesby’s daughter has frequent seizures and paralysis and neurological episodes that can leave her struggling to breathe.

‘There are times when we’ve said we’re not sure she’d be alive if I wasn’t a doctor,’ says Dr Walesby.

Even with the support of hospice nurses and paid carers, the ‘cortisol drive’ of caring affects the whole family.

The parents have spent time in hospital with severe physical illness as a consequence of not being able to look after their own health as carers. Dr Walesby’s husband now has secondary progressive multiple sclerosis and has given up work to care for his daughter. Their four-year-old son stops whenever he hears an ambulance, asking if it is for his sister.

As previously reported in The Doctor, Dr Walesby has had good support from supervisors and employers since her daughter was born. Yet, her training has been protracted as she can only work 20 hours a week, and her salary is unbanded as caring responsibilities limit her availability. The family have had to seek crowdfunding to pay for necessary adaptations to their Edinburgh home to meet their daughter's needs.

It’s little wonder then that Dr Walesby feels strongly that family carers deserve more recognition, including from those in her profession.

She is concerned that many unpaid carers feel they are not sufficiently involved in care planning – something the NHS’s 10 Year Health Plan for England acknowledges.

Dr Walesby has been able to feed into an emergency-care plan for her daughter but has had to push for her voice as a carer with lived expertise of AHC to be heard.

In her academic work, she promotes the ‘triad of expertise’ – collaboration between clinicians, researchers and those with lived experience – as essential to the best ‘person-centred care’.

In her clinical work, she is much more likely now to ask family carers if they want to ‘stay in the room’ during treatment (as appropriate), or to phone a family carer knowing he or she may be unable to visit because they are perhaps working. Dr Walesby is also much more likely now to signpost carers to support as part of the care planning and to ask them: ‘Are you OK?’

Sadly, she has found clinicians can sometimes be defensive in the face of family carers’ lived expertise in their loved ones' conditions, to the detriment of carer-clinician relationships and patient outcomes.

‘As carers, all we want is to sit at the table to share around “what is the best way to deliver the safest and best care for a child?” As clinicians, we are only seeing a snapshot of the patient’s life: we don’t live with their disease. We can learn from patients, not just textbooks. You don’t need to know all the answers.

‘There’s a lot we as clinicians could collectively learn by saying that we’re human too, and we’re all going to be patients and carers at some point.’

Home Office rules keep carers and their loved ones thousands of miles apart

Cultural expectations can add extra layers of complexity to caring which are not widely understood.

For 10 years, Raman Lakshman, a consultant paediatrician in Suffolk, was a long-distance carer for his older parents in India. All of his leave went on visiting them in Mumbai several times a year and much of his time was spent worrying about them, especially as their health declined.

As he was their firstborn son, traditional Indian culture dictated that his parents relied on Dr Lakshman for their care, in the absence of adequate state care. The fact that he is a doctor too, albeit a paediatrician, conferred extra responsibilities upon him, in his parents’ eyes at least.

When his mother Lakshmi was widowed in 2021, there was no question she would live anywhere other than under her eldest child’s roof. ‘It’s what’s expected,’ Dr Lakshman says. ‘Parents are held in very high esteem in Indian culture.’

Dr Lakshman has always found colleagues in the UK ‘extremely supportive’, allowing him to work condensed hours to make space for travel and to work partly from home now so he can help care for his mother.

But these cultural dimensions to care have been hard to explain to the Home Office.

The fact that the UK’s ADR (adult dependent relative) visa rules prevented his parents from coming to the UK for years was a source of great stress and sadness for Dr Lakshman. He has campaigned with the British Association of Physicians of Indian Origin, alongside the BMA, for a review of ADR rules for healthcare workers.

He finally managed to bring his parents to the UK on a visitor visa in 2020, ‘when it was clear that they couldn’t manage’, but his father, Raman, died within months.

Dr Lakshman speaks openly about suffering burnout and needing to take six months’ leave after his father’s death; he mentions often feeling guilt and remorse for not being nearer his parents.

These feelings can still assail him now, when he goes out to work and leaves his mother at home. ‘People underestimate the difficulties of all choices,’ he says.

All this has helped him understand better what his patients’ families endure. ‘Caring takes a huge toll, whether it's for a young person or an old person, and you need immense compassion to continue to be kind all the time.’

• Medical professionals can signpost or refer carers to Counselling Carers, a specialist not-for-profit counselling service
• Carers UK maintains a directory of local carer support organisations