complaint to Wolverhampton's New Cross Hospital about the way both Neil and me were treated days before he died.
I've had phenomenal support since penning this intensely personal story and last week appeared on the BBC News Channel, BBC One O' Clock News, ITV lunchtime and evening, and Sky News, who have kindly provided me with the above clip. I also spoke to BBC Radio Five Live and my audio was shared with various regional BBC radio stations. The Independent wrote an in-depth article and leader column about care for the dying and I've done a very sensitive interview this week with the Wolverhampton Express & Star. I had to turn down approaches from other national news programmes as I just couldn't be in two places at once.
This was because my blog post was picked up after being shared on social media by Joe Levenson from Dying Matters during their 'you only die once' awareness week. A report from the Royal College of Physicians said too many people dying in hospital were not being cared for as well as they could be. This was my opportunity to be heard, and thanks to Joe, I grabbed it with both hands. You can see there's a lot of emotion as I speak, my face is red and I only have to be asked a single question before I launch into recounting our family's turmoil, hardly drawing breath.
As you can imagine, for someone who wrote a blog post wanting just to be listened to, I never suspected I'd end up speaking to millions through national media. It was a cathartic experience for which I'm immensely grateful. Each and every journalist in touch has been hugely respectful.
I have plenty more I want (or need) to say about being bereaved and when I don't have a big pile of work to do, I hope to be back blogging.
I was very interested today to hear of a report from Macmillan which reveals cancer patients in the UK aren't treated with the greatest of compassion and are denied "a good death."
As I approach the second anniversary of losing our beloved Neil, I still carry the trauma of what happened in his last days in Wolverhampton's New Cross Hospital.
Compassion was sorely lacking.
I was commissioned to write about this some months ago for a national newspaper as a case study in a bigger piece about NHS failings. That piece never saw the light of day. So here I am getting it out there.
My husband Neil died in May 2012 of melanoma, six weeks after his 44th birthday.
The hospital concerned has told us they are “deeply sorry” for some aspects of Neil’s care and in response to others, an action plan would be developed. In short, things were to change because of our experience and my complaint. I felt compelled to tell our story as too often now I’m being told it’s typical and I wanted to help prevent similar distress for other families in the future. Today's report from Macmillan tells us what too many people already knew.
Ours is not a headline-grabbing case of massive negligence, rather, to me and my family, a heartbreaking account of how so many basic things can be overlooked.
In writing a complaint letter to the hospital, I wanted to call for better training for staff on general medical wards so that other families are less likely to suffer as we did. To be honest with you I also want to tell this story as it hurts so much and I'm still getting flashbacks.
I asked management to explain what training staff in general wards underwent to meet the needs of terminally ill patients and urged them to consider investing in increased/improved training.
I received five pages of apology.
These are points, condensed but also added to a little here, that I raised:
Days before Neil died:
- Despite being admitted because of dehydration, he was refused a drink of water as we waited in the Emergency Assessment unit. He was given a drip sometime after we arrived (I don't recall how long this was, but certainly more than an hour) only to have it removed to stop porters, who broke into an argument in front of us, refusing to take him for an X ray. They rowed about this between themselves and didn't say or do anything to acknowledge our presence as the subject of their disagreement over whether you could take someone to an X ray with a drip attached. I watched them in silence. It would be up to a doctor whether Neil could have a drink. Every time I asked when the doctor would see Neil I was told: "Not a clue." Five hours later, at around 9pm, we saw one. I clearly remember wondering what the point of being there was and to this day, I have no answer.
- Once he was on the ward, and this is an image that haunts me, Neil lay motionless half way down his bed, his face and clothes smeared with food, while plates piled up still stacked with uneaten meals on his over-bed table. I hated the way the nurses referred to Neil, for example when I asked why he wasn't eating, I was told: 'He likes his independence too much.' To me, hearing a young man of such fierce intellect spoken of in such patronising terms, as if he was a wilful elderly patient or child, was hard to bear. I pulled the curtains around his bed to stop other patients staring at him. I wanted him to have privacy and dignity, both of which were evidently lacking. A nurse immediately drew them back.
- We were laughed at when we attempted to report his Kindle missing from his bedside and asked if it could have been stolen. In everything our family has gone through in recent months, the memory of a nurse laughing at me while my husband lay dying is one of the most painful. I couldn’t believe how nurses were interacting with me, with a sort of ‘enforced jollity’ hours after being told my husband was so desperately ill. I started sobbing that I wanted to take him home that minute. I'll let you imagine how we all felt that Neil's Kindle, a thoughtful birthday present from some of our friends, had been taken from his bedside in his last days. Later, as I aired my concerns about Neil's care to a senior member of staff, he admonished me for bringing in valuables.
- Neil was refused a wash and told he could have a shower in the morning. In the morning he didn't get a shower as nurses didn't have time. Me and one of my 13-year-old daughters spent an hour with Neil who could barely stand, in the ward bathroom, we were in a very distressed state but wanted to do our best for Neil to fulfil a basic need that had been refused. My daughter insisted she wanted to help, I was inconsolable that she would have this troubling episode as a memory so close to losing her dad.
- Later a nurse came and said that they would have given him a wash but they were on changeover. If someone had explained this to me in a professional and caring manner then maybe it wouldn’t have been such a distressing turn of events but they didn’t. Instead I had been dismissed and made to feel unreasonable for requesting the most basic care.
- A nurse in the emergency admissions unit met our repeated questions about what was happening with the answer 'not a clue'. Days later we requested a wheelchair so we could take him out of bed, the response was “Who’s Neil?”
- He fell from his bed and no warnings about his limited mobility or danger of falling were displayed. What do you think I would like to say about that?
- On another visit we were told that nursing staff had been unable to give Neil his prescribed medication as his notes couldn’t be found. As one of those medicines was morphine to control his pain, this was another cause of concern.
- Some days (most I think in this short period, though my memory is blurred) I wasn't allowed to be with him at any other time than in visiting times and should have been advised of flexible times. This hurts so much, I think so often of that lost time with him and how I wasn't there just to hold his hand. I did ask for longer with him, out of normal visiting times but wasn't allowed before his last two days when we were told he would die in the ambulance if he was moved to St Giles Hospice.
- With no staff in view, after giving him a wash, I said goodbye one night to Neil, an elderly man two beds down started shouting at me for help in finding something. I said I was sorry I didn’t work there. He became very angry and shouted at me some more. I was upset there were no nurses to look after someone else who was now berating me for not doing their job – an utterly chaotic and distressing experience.
- When I took up all the above points with a ward manager, I was told there were patients “much more ill than Neil.”
- Another scan we were told would be booked ASAP never happened. Four days later a forgotten request was found in Neil’s notes, despite assurances when I attempted to check on progress that efforts were being made to move him up the list. By this time, we were told there was no point in having more tests, Neil's condition had deteriorated to the extent he was going to die soon. I remember a conversation with a junior doctor I hadn't met before around this time whose words went along the lines of "I am sorry your husband has cancer." Baffled by his response to my questions, I replied I'd known a while.
- A palliative care team wasn’t informed of Neil’s presence in the hospital until 48 hours before he died, I felt so very strongly about the nurses’ dismissive attitude and the fact that we weren’t afforded a single word of kindness before Neil was transferred to the specialist cancer ward where he died after spending five days on a general medical ward.
- Raising the point of how we were spoken to, I said in my letter to the hospital: “You may not find this a significant complaint but I can assure you that faced with the anguish of Neil’s condition such dismissive treatment from an overworked nurse cut like a knife. In hindsight, knowing he had days to live, I am baffled how anyone working in such an environment could find this communication acceptable.”
- During our five-hour wait to see the doctor on the night of Neil’s admission, an elderly woman patient came and took Neil’s blanket, accusing him of stealing it from her. There was not a member of staff in sight to come to our aid in the face of a clearly agitated woman and I was alarmed by how she was scaring Neil. I told her to go away and leave us alone.
- When Neil returned from x-ray after being admitted, I couldn’t find his drip. I found a nurse to tell and she said she had taken it off. I was worried about how long he had been without it but got no further explanation. I asked for it to be refitted and some 20 minutes later it was. Had I not have left Neil to go and find a nurse and request the drip was returned, I dread to think when this would have been refitted. I considered keeping a patient hydrated a basic part of care and was upset that this was not being achieved – especially when this was the reason Neil had been sent to hospital.
- It is a huge source of grief to me that Neil’s last days were filled with such chaos. I feel so much grief that we didn’t continue to look after Neil at home instead of him enduring what we did.
I wrote seven pages of complaint to New Cross Hospital, Wolverhampton around a month after Neil died when I could find the words. After a month my complaint hadn't been acknowledged so I rang and was told the letter must have got lost in the post. Later I was told more time was needed. The final response which came two months after I made it was five pages of apology which sought to reassure me my complaints were taken seriously and improved training/communication was under way. Reading the answer to the points I raised sent me into a panic attack - the second since I was given the news Neil would die within 48 hours.
The hospital’s response: (Signed by Kevin Stringer, Chief Financial Officer on behalf of David Loughton CBE, Chief Exec Royal Wolverhampton Hospitals NHS Trust )
An investigation was carried out.
On our care in EAU:
They acknowledge the way we were spoken to was unacceptable and apologise. They outline how requests for information should be met with respect and courtesy. They say we should have been treated with more sensitivity.
They say my raising questions about training was appropriate and outline the training they undertake and add that the EAU isn’t an ideal place for terminally ill patients. They say staff now work closely with the palliative care team to provide necessary support. (I think but can’t be sure this means a result of my letter which is a comfort.)
The missing scan request
They say it is not clear if the request was ever received.
Our experience with the drip
They say fluids should not have been stopped and are ‘deeply sorry’ for what happened, staff have been spoken to.
They say our experience was below standard and my concerns are being discussed further at a team governance (quality) meeting in order to ensure protocols are in place to prevent a recurrence.
They are “extremely sorry” he fell while in their care.
They apologise that no advisory signs were displayed over Neil’s bed.
All staff have been reminded of the importance of such signs
They apologise these weren’t extended for me
Lack of basic care and hygiene
They apologise that the appropriate care and attention required was lacking. All staff have been reminded of the importance of undertaking comfort rounds
They apologise that staff reaction to a request for a wash led me to take matters into my own hands
Loss of kindle
They apologised for the poor experience we experienced
They are sorry I felt we weren’t given enough information and also wish to apologise that I felt staff didn’t offer appropriate support at this extremely difficult time and at times they behaved inappropriately, adding to my distress.
My experience will be shared with relevant staff at team meetings and directorate governance forums. An action plan will be developed in response to my experiences.
They were very concerned to read of our experiences.
“Please let me say how sorry I am for the additional upset caused to you and your family at this time. I hope you are reassured that your comments have been taken on board by the nursing team and group managers.”
The care Neil received in the specialist Deansley cancer ward at New Cross was amazing from lovely, lovely people. He was there for five weeks in one go at one time, and he eventually died there. St Giles Hospice were also phenomenal through their home care and counselling services and a bed was ready for him, but he never made it. Perhaps if the palliative care team at New Cross had been told earlier we were there, who knows, he may have.
Macmillan blew us away, helping Neil walk so he could accompany me down the aisle at our wedding. A happier memory is how the nurses and doctors at Deansley stood and clapped as he inched his way down the corridor with a walking frame after weeks of not being allowed to move and losing all mobility, thanks to his remarkable determination and the unswerving commitment and patience of the Macmillan physios. His consultant Dr Simon Grummett never treated Neil with anything less than complete respect, care and dignity, his support for us and his hopes of helping Neil live longer through innovative treatment brought us great comfort.
It has been a long time since I have blogged here. There just haven't been enough hours in the day. But I have been itching to share what we got up to in Africa, how it went, the difference it has made to our family and to say another massive thank you to everyone who helped us get there with their kind donations.
In short, since losing Neil, I have never felt so alive as the time we spent with our fellow volunteers and the youngsters we met. Here's our story:
Watching my daughter Melissa set off to walk four miles carrying a bed for a nine-year-old orphaned African girl who slept among rats on the floor, I cried big fat tears of pride.
We were doing this in Neil's memory. I hope that one day there will be an element of our involvement that I can put his name to as a lasting reminder for all to see of his decency and compassion.
I find it amazing that such an unassuming, modest group of people should make such a difference and honoured to be allowed to walk alongside them. It's hard for me to imagine that mothers have so little that their newborns are sent away from hospital wrapped in newspaper but mind-blowing to consider women in my village are easing this burden.
Melissa trekked for hours along a dirt path to deliver the bed we had built together, while me and her sister Emily carried another to its new, less faraway but equally dilapidated home.
We were in a remote South African community fittingly called Share, in a region called Bush Buck Ridge.
Our mission was to start to help some of the continent’s poorest children. These youngsters had lost one or both parents to HIV and Aids or were devastated by a more sudden death.
Now they lived with their grandmothers, themselves often child-like through the effects of trauma, or a toxic combination of no education and deteriorating faculties.
As young brothers and sisters woke to the sight of their parents’ crudely etched graves in the heat and dust outside their bedroom window, facing hours of chores, there was little time to be a child.
We were helping a dedicated team of local women offer the children hope, through food, education and healthcare, with a small charity called Hands atWork.
The amazing women caring for these children – bringing them one simple meal a day -- and attempting to mend fragmented families had very few material possessions. But driven by a deep faith, they brought love by the bucket load. Each day their voices filled the air with soulful songs of celebration, giving thanks for the community.
The tiny British charity taking us there is called Link4Life – inspired by an aim of forging long-standing meaningful, relationships, working together over a lifetime to bring real improvements.
They asked us to put together beds for 12 children of the 50 they are able to help from their centre, and to help build a ‘long drop’ toilet so little girls and boys no longer had to crouch behind the centre’s walls.
We were part of a 14-strong team throwing ourselves into the tasks with aplomb. Colleagues from Link4Life had already painted the centre, set up a fence and embedded colourful tyres as play equipment.
In these still bleak surroundings, I was upset by the scale of deprivation. Yet my wise fellow team members could see how things were improving and thankful for the steps taken so far.
Our job was to cuddle the children, to play with them and show them love. We were not there to pity or point and say: “Oh how poor they are.”
There was no international marketing fanfare to throw Western money at these children and impose our own solutions, we were there to listen to what they genuinely needed. Each day we listened and got on with it.
But they were also helping mend us.
My tears came not only from pride but from waves of understanding and grief. My beautiful brave girls getting blisters carrying the beds and laughing with the children in the playground, understood their heartbreak. They had lost their dad, my gorgeous husband Neil, just over a year before we found ourselves in Share.
The care workers and our companions from our local village community of Cheslyn Hay in Staffordshire told us they would be thinking and praying for us too, that we needed their love.
Having spent months attempting to come to terms with our grief and facing the future without Neil, to meet so many bereaved children and see the pain in their eyes was a cathartic and humbling experience, especially when their care workers recognised the same agony in us. Yet as we witnessed the difference we were making, since losing Neil, I had never felt so alive.
The reason behind our visit was uncomplicated -- to meet the children, be at their side and help tell their stories.
As the three of us made a hash of sweeping a grandmother’s yard during a home visit, he would have laughed fondly as she tutted and told us to do it again.
We also had the opportunity to visit a hospital in Durban, where babies are now sent home clothed, rather than in newspaper, thanks to a group of knitters, some of whom are just streets from where we live. This is the Baby Bear project.
As I helped hand over freshly knitted clothes to women in the last stages or of pregnancy or hours after they gave birth, I sat and chatted with a young mum of newborn twins. Rosie, 25, from a nearby village, who told me she would name one of her daughters after me.
Again, the tears flowed. This time I was crying with joy.
At a banana plantation where an international team of nurses ran a basic health clinic, I held a young girl’s hand while she underwent traumatic treatment to Impetigo on her head.
At a banana plantation where an international team of nurses ran a basic health clinic, I held a young girl’s hand while she underwent traumatic treatment to Impetigo on her head.
I’m not a religious person but could not fail to be moved by the dedication of those who used their beliefs as a reason to roll up their sleeves to see their hands at work among such need. Nobody was preaching,just getting on and helping in desperate circumstances. Perhaps the most moving part of our visit was spending a Sunday morning at a church built from sticks, with fabric oddments adorning the makeshift walls as underfed children in their best dresses sang hymns beautifully. Outside they played with toys fashioned from bits of old wire. It was heartbreaking but uplifting at the same time – you couldn’t help but be in awe of these children’s spirit.
Still, my tears have given way to smiles as I think of the children we helped, including my own and a new little girl called Linda.
We have a link for life.
How you can help
The Baby Bear project is looking for more knitters. Please leave a comment here if you can spare the time to get involved and possibly help clothe newborn babies or email me on linaitchison(at)gmail.com.
A direct debit of £15 a month feeds one child at Share. Please visit www.edscouriers.co.uk/ for more information.
I've also included a Donate button in the top right hand corner of this blog to help me send money in a monthly direct debit.