Eileen & Mike's story

This blog is written by Eileen, a Just Treatment supporter based in Gloucestershire.

On 19th June, my husband Mike passed away after a short period illness but declining health over many years. I had been his carer for the last five years. Mike himself chose palliative care in the home as his preferred option for end of life care. This is something that I will return to.

There are three matters I would like to raise, having experienced Mike’s treatment first hand against the background of an NHS which is recognised to be under stress. My hope is that lessons can be learned from our experience and in this regard I include myself in this process:

• Emergency treatment

• The need for a coordinated approach to diagnosis

• End of life advice and treatment

Emergency treatment

Mike’s infirmity had been declining for some time and two years ago, in the winter, he had a fall in our garage and broke his hip. I couldn’t physically move him and we had to wait twelve hours in the cold for an ambulance. By the time he did make it to the hospital in a near state of hypothermia, there were no available beds or space. In the end the hospital doctor on call treated him in the back of the ambulance effectively taking this scarce resource out of action, not to mention creating an inefficient use of the doctor’s time. I am aware that this type of episode is all too common and only reinforces the need for the ambulance service operation to be considered afresh as a distinct and important NHS function. Perhaps a more innovative approach is needed.

The need for a coordinated approach to diagnosis

More recently Mike’s health began to decline accompanied by decreasing mobility and increasing pain and discomfort. Our visit to our surgery was against the background of an instinctive feeling that his health was seriously wrong. The resulting tweak to his ongoing medication didn’t work and soon afterwards we resorted to attending A&E to establish a more thorough diagnosis. To their credit, the staff’s close investigation resulted in Mike being given two different scans. These revealed a terminal diagnosis so advanced that he only lived for a further 3 weeks.

Our experience led us to the feeling that, due to the immense pressures our health service is having to operate under, patients are having to be rushed through the system, without enough time to properly and thoroughly assess conditions. This is a criticism of the system rather than individuals. 

Even though Mike’s outcome may well have been the same, I couldn’t understand why his condition wasn’t picked up all those months ago when we were saying something’s not right. I do not put the blame with the health workers. I believe they did, and are doing, the best that they can with what is available to them. It seems to me that the problem on the frontline is created in the corridors of power where policy decisions are made. I suspect that our experience is a microcosm of the result of those policy decisions.

End of life advice and treatment

Mike’s decision to die at home was taken by him with the best intentions.  It was an environment he knew and his wishes were made against a background that his final days would be in the comfort and peace of his own home.  My own limited mobility was put aside to satisfy Mike’s wishes but with hindsight, I think his entirely understandable view was taken in the absence of reality as his passing could not have been further from his intentions.

I am traumatised by what both he and I had to endure, and so that no other families have to experience what we did, I would like to offer some sage advice.

Mike’s palliative care was delivered by a number of agencies – a local community hospice, a team of community district nurses and overnight care (which never happened).

By comparison, the end-of-life care that Mike received at home was patchy in pain relief service and frequency and, in reality, not able to deal with Mike’s needs on demand. Perhaps this is not surprising for someone in his condition.

The most traumatic moment was when Mike fell while attempting to use his commode. An 8 hour agonising wait for medical help to arrive was compounded by the urgent need for pain relief whilst I pleaded by phone for help to come quicker. Whilst his Hospice Healthcare Assistants were compassionate they had been instructed not to move him, and in the end, the St John’s Ambulance were finally able to tend to him. 

The intensity of his pain and the limitations on his movement meant that he needed a level of support that just wasn’t available through the service we chose. It felt to me like we were left to fend for ourselves. I didn’t sleep for 6 days and nights – the overnight help came the day he passed away. One week after his discharge from hospital into The Hospice at Home package. 

With hindsight, and given the added issue of my limited mobility, we would have found it immensely helpful if it had been explained to me very clearly what we were about to face, warts and all. I say this irrespective of what Mike wanted. Romantic notions perhaps, but who knows, armed with all the right information, he may have changed his mind and chosen the warmth and caring environment of a Hospice with all the necessary attendance which comes with this level of care. These are difficult decisions to take and I would not wish them on anyone but, as I said at the beginning of this letter, first hand experience counts for a lot and I willingly pass it on.

Conclusions

I want to see our NHS with more resources, so that our poor health workers are not purely running to stand still. I want to see it managed differently so that across all frontline areas, patients get the care that they need and deserve and in the right care environment. 

I like to think I did the best I could for Mike, but I can’t help but feel it wasn’t enough. His life should not have ended like that - he deserved so much better. To this day I am having nightmares about those final days and hours, and I never want anyone to go through what we did. That’s why I am sharing our story; so that I can channel our experiences into pushing for positive change for patients and our NHS.