Caring for my godmother made me realise how unseen and undervalued unpaid carers are.

Research by Carers UK estimates that up to 10.6 million people across the UK are providing unpaid care, with one in seven people in the workplace juggling work and care.

I became one of these people when my godmother, Jean, who over the last few years had been like a mother to me, was diagnosed with bowel cancer on Friday 29 September 2023. Fortunately, tests showed that it was treatable and curable. Three days later she was admitted to hospital for her first of two operations. Jean asked me to be her main carer and, realising what this might mean, I started to gather a group of her friends to support me to care for her.

Jean was discharged from hospital after 2.5 weeks and, as well me supporting her, she was given assistance from the Community Reablement Team for six weeks post hospital discharge. As well as the cancer, Jean had a range of pre-existing health conditions including severe arthritis, a severe skin condition, curvature of the spine and lupus. Despite both of us trying to explain that reablement was the wrong type of support, due to all the other conditions she suffered from, the team were still deployed every day and tried to get her to perform tasks that she hadn’t been able to do for years. They were all lovely, caring people but no amount of discussion with their team leaders seemed to get the point across that the care wasn’t what was needed. It seemed that no-one wanted to listen.

Radiotherapy and chemotherapy followed the operation, and I was very grateful for the support of five of her friends. We were all involved in transporting Jean to her very full calendar of appointments for treatment, scans, checks with the oncology team, the GP, counselling, and appointments with charities such as Macmillan. On top of this, there was food shopping, house maintenance, and regular appointments with the dentist, optician, and podiatrist. ?Jean was very weak, and we tried to encourage her to eat well on her new limited diet, rest, and support her to deal with the stress of the diagnosis and treatment.?

Three of us fitted these additional tasks around work and the other three fitted this in around their retirement and family commitments. Fortunately, most of my work commitments are flexible, and I work with very understanding people. Because of this I could continue with a large proportion of my work, albeit with some apologies for being late to meetings and events. If this hadn’t been the case, I would have had to take significant time off work or stop work completely. This is the case for 57% of carers who stop work or reduce their hours due to the stress of caring.

In addition to the expected Cancer Related Fatigue, Jean and I had Appointment Related Fatigue. Jean had to be up at 7am every morning to meet the demands of all her appointments. None of the appointments were coordinated. Some were at home, which was helpful, but the repeated visits to hospital were very difficult because of her extensive mobility problems and her increasing frailty. We ordered a blue badge, which would have been very helpful but the time lag for getting this approved was five months. When she finally received the badge, she was a hospital patient, so it was never used. The use of a disability friendly parking space would have been a great help.? Within a couple of months, it became clear that Jean also needed professional carers to look after her growing personal needs. She was very worried about the cost but agreed with my initial shortlist of care companies, with affordable hourly rates. Jean was an award-winning negotiator in her working life, and she selected an agency after a rigorous interview, where she grilled them with her questions. Disability Living Allowance took three months to receive and made a small contribution (less than a third) to care costs for care of 1 hour 20 mins per day. Because Jean was in the house more and needed to keep warm, she had higher electricity and gas costs. All these pressures were worrying for a pensioner on a low income, and she frequently

It was a relief to have carers taking care of her personal needs such as washing and dressing plus supervising her eating, which had become a problem, due to choking. ?They were excellent - flexible, compassionate, and cared for her every need including her emotional support.

The news we got from the hospital in February 24 wasn’t good. The cancer had spread to her liver. The treatment of the bowel cancer was stopped. The end-of-life prognosis was 12-24 months away and was troubling to Jean because she was continually worried about money. Having a prognosis of this length meant that some funding avenues for increased care were not an option, as they aren’t payable until the end of life. It was so sad that this was her main concern in the last period of her life. This also becomes a concern for carers with 63% of carers saying they are worried about living costs and whether they can manage in the future. Jean was now a 79-year-old on the palliative care/ older peoples’ pathway, not the oncology pathway. It was frightening how NHS support slowed down with this transition. I chased up much-needed equipment to help her in her home. This experience was a soul destroying one, as I was passed from one staff member to another, with no one wanting to help. After half a day of trying to order a specific piece of equipment, I was no further forward. Other people had told me that they had experienced similar issues with equipment supply. One carer described how she had been in tears when trying to gain equipment for essential equipment for her dying dad, because of the attitude of the staff who were the gatekeepers. With my knowledge of the system, I was able to contact people who could unblock the problem. Within three hours, the equipment we urgently needed had been delivered and training was arranged for staff. I had these contacts but if I hadn’t Jean would have been bed bound. How many very ill people are left in this sort of situation, without the essential kit that they need. How many carers are experiencing these unnecessary stressful situations?

A swallowing assessment had been requested for Jean at the end of December 2023 due to frequent choking incidents. In March 24 it still hadn’t been carried out despite much chasing. Following an assessment by the Urgent Care Response Team, Jean was blue lighted to hospital due to a severe choking episode. This was her 10th incident of choking, all of which had been reported to the NHS, but this still did not bring forward the swallowing assessment.

A & E is a frightening place for an older person. Jean went straight to the rapid assessment unit, and then into a quieter area for older people, many on their own, lying on trolleys, with no welfare checks. I stayed with Jean and tried to help others, and it was heart breaking to see people lonely and afraid. After six hours, I was told by a registrar that I could take Jean home and feed her ‘at risk’. When I asked the question ‘at risk of what’ the answer was ‘dying’. I refused to take Jean home. I had to make it clear three times that I was not taking her home. The next day, the swallowing assessment happened in hospital. It showed that Jean had hardly any swallowing action, and there was some sort of blockage in her throat. A barium swallowing assessment was arranged but the wrong transport was booked by the hospital staff and Jean didn’t get there. If only the system had listened to the multiple phone calls from her, me, and her GP, trying to push forward this assessment.

In her first week in hospital, sadly Jean developed a pressure sore and was fed at risk, which caused her to develop aspirant pneumonia. For the second week, which turned out to be the last week of her life she was transferred to the elderly care ward. On this ward I was with her from 8.30 in the morning to 8.30 at night. This was not a reflection on the staff, who were compassionate and caring, but there wasn’t enough of them.

Jean couldn’t press the staff call button because of severe arthritis and couldn’t call for assistance as the pneumonia had affected her ability to speak. She needed someone with her – how many people are in this situation but don’t have anyone with them? I was given a Carer’s Lanyard so I could be at the hospital out of visiting hours, be served hospital food, and receive a pass for free car parking. All this was so helpful. The care for Jean improved markedly with amazing support from all the staff, but she was on a big ward and there were too few staff looking after a range of challenging patients, many with dementia, and one with Covid, which meant we all wore masks. The lack of staff meant that when two qualified nurses were needed to administer morphine, there weren’t two nurses free. Very unfortunate for the patient and very difficult for the staff who can see a person, in their care, suffering.

Jean passed away peacefully in her sleep on 22 March 2024.

In some respects, she and I were lucky. She had me and a group of friends to support her with care and she had a small amount of money to pay for caregivers in the home. Her main worry wasn’t the cancer, but the lack of money to pay for care and treatment even though she had worked full time for 42 years. With nursing home costs starting at c ￡1000 a week and carer costs at c ￡30 an hour, this is a real worry for many people and their carers.

Unpaid carers in England and Wales contribute ￡162 billion to the economy per year, the equivalent of a second NHS. As we enter Carers Week, some of the main issues / lessons that can be drawn from my experience include:

·?????? As a carer you have no time for yourself. Most of your time is focused on the needs of the person you care for. Your health suffers, your fitness decreases, and it takes a toll on your mental health as you are constantly dealing with stressful situations. Many systems are introducing resources to support carers, which is very important at such a difficult time. The carers lanyard helped me enormously.

·?????? Our health and care staff have very complex jobs in very challenging circumstances. Most of them are amazing, but some staff don’t seem to want to listen. A number of key care staff didn’t listen to Jean or to me as her main carer. They made suggestions for Jean to follow, that were not realistic. She tried to follow them, and this increased her fatigue and feelings of hopelessness.

·?????? There was no detailed communication between specialties – letters were sent between organisations and departments, but care was provided in silos and was sometimes contradictory.

·?????? Simple support, that should have been routine in hospital, such as providing a pressure cushion or raised toilet seat would have made a big difference for Jean. Staff were asked numerous times for these aids, but no action was taken.

·?????? Staff who deal with the public should be recruited for their positive, helpful attitude. Recruiting people, who genuinely care about the end user and are willing to understand their needs and respond accordingly, is essential to provide a compassionate and caring service.

·?????? Processing times for blue badges, benefits and other support that is much needed should be accelerated. Ill and needy people and their carers don’t have time to wait for this support.

Carers Week, taking place from 10–16 June 2024, is a UK-wide awareness campaign seeking to increase visibility for carers. In this general election year particularly, policymakers and politicians need to listen to carers and patients and make changes to better support their needs.