Hear my voice | The accidental carer

In the build up to Carer’s Rights Day on 25th November, we wanted to republish one of the first blogs that Healthwatch Essex was fortunate enough to access from a carer. John shared his story with us about becoming an ‘accidental carer’ for his partner Ann, telling a powerful and heartfelt story about what it is to take a on a role that he had not planned for. His tale is an all too common 0ne, highlighting where services were good and where they fell short. It’s a few years old now, but no less powerful or relevant:

“Ann died last year of breast cancer, which had spread to her brain. For 30 years, she was my partner, wife, guide, refuge and dearest friend. For the last year of her life I cared for her almost full-time. I wonder just how many other accidental carers are out there, unexpectedly thrust into a life totally foreign to them and for which they have no preparation. After Ann died I decided that I would share my experiences in the hope of helping other ‘family’ carers and possibly contributing to improvements in the care system itself.  

“Ann was first diagnosed with breast cancer just before Christmas 2006. After four years of gruelling treatment and an ‘all clear’ diagnosis at one point we were told in early 2010 that secondary cancer had spread to her brain. Surgery was not an option for her and after whole brain radiology she was handed over to Palliative Medicine. The handover to Palliative Medicine was particularly traumatic and badly handled. I would go so far as to describe it as brutal. There was no discussion of possible further treatment and no sensitivity displayed. We felt abandoned, as if we had been tossed over a wall to an unknown and frightening land. It felt as if there was an invisible wall, and that once crossed there was no communication with or possibility of a ‘visit’ to the other side – perhaps for alternative treatment.

“Looking back, I have only admiration and gratitude for the great majority of people and services who contributed to Ann’s care; for the commitment and kindness of the NHS community nurses, and other NHS services and staff, Ann’s GP and others like the pharmacist who never let us down. Also for the local hospice and the lovely people who worked there, albeit with limited resources. Their compassion and care, both for Ann and for me as her carer, shone through. Later on, day visits to the hospice were one of the small pleasures that Ann enjoyed.

“But we also met with a few situations and people that fell short. I had to confront and battle with these on Ann’s behalf, and this caused me a lot of stress and mental conflict that I had to conceal from Ann. The speed and efficiency with which our home care package clicked into place when Ann left the hospice to be at home was impressive. There were three agency carers in particular who undertook home care visits for Ann. They deserve special praise. Ann’s face just lit up when they arrived. Briefly she was almost happy. To see her like that lifted my spirits too. They showed what care truly is. In contrast, there were two other care workers who carried out their tasks as quickly as possible and left. They did not establish any real communication with Ann, and they did not show any extra little thoughtfulness that would add to Ann’s trust and comfort in their hands. The difference was stark.

“This leads me on to some of the shortcomings which I encountered along the way – importantly of processes, but also within organisations. I observed a ‘great divide’ between the NHS and Social Services – the two are not joined up and do not work together. The resulting bureaucratic mire is extremely difficult to navigate – especially for carers who are already under a lot of strain and do not have the time or energy to battle with red tape.

“For example, as the responsibilities of being a full-time carer increase, it’s so important to have some time off. Although in my heart I wanted to be with Ann all the time, I needed some respite. I approached NHS Community Services about this, and was given two nights per week sit-in care from an agency. But the NHS would not fund any daytime respite care as it was not classed as a clinical need for me, or Ann. They suggested I contact Adult Social Care Services – but I was passed on a merry-go-round from one person to another, at one point returning to where I had started.

“The process put me under a great deal of stress and pressure, rather than relieving it. Towards the end, I did find a carer support organisation which was able to take up the role of advocate to try and get the help I was asking for. But the immediate result was a lot of bureaucracy, which was too much for me to deal with at the time. In the end I gave up. Carers need respite and support and I feel there is a failure of understanding within the NHS commissioning process.

“I also experienced a fundamental flaw in the contractual model between the NHS and care agencies. It seems to me that the contract between the NHS and the home care services is exactly that: a contract between two organisations that excludes the third and most important – the end-user, the patient. And I found a lack of compassion and understanding at the centre of home care agencies. For example, two months before Ann died, the home care service decided that Ann should be put on ‘bed care’. This meant care workers would no longer help Ann out of bed, for example to use a commode. We were not consulted about this. The decision seemed abrupt and premature – I was still able, alone, to get her out of bed. The impact on Ann was quite devastating. I tried to fight it with the limited time and energy I had. But my written complaint received no reply until it was too late for Ann.

“Sadly this was not the only failure of compassion from a care agency – the second occurrence (from another agency) being accompanied by some totally unprofessional behaviour. Ann was a brave and wonderful lady, whose nature was to invite warmth and kindness and respond to it. Predominantly the people who cared for and helped her through her last months and days provided this warmth and kindness and a high degree of professional skill. There were even some happy times on the way. But there were occasions where individuals and systems failed her as a patient and me as her carer. They ranged from practical support to a true attitude of care and compassion, which should surely be at the top of the list for anyone in a caring profession.

“These failures of culture and practice need to be addressed and changes made for the good of all the accidental carers out there and their patients.”

 – John from Essex