How care has changed since Mid Staffs: my personal experience

Summary

A powerful account from a daughter on the care her mum and dad received in hospital.

Content

From 2005 to 2009, between 400 and 600 more patients died at the Mid Staffs Foundation Trust than would have been expected. The high mortality data being a red flag to go and check. To actually open a door, enter a ward and see and hear the patients and their family’s experiences. Cost cutting and prioritising of targets and obtaining foundation trust status sadly resulted in the patients and families becoming lost and not always a priority in a care system that had, in parts, become immune to the sound of pain.

The Public Inquiry heard from 250 witnesses and over a million pages of documentary material. A 'story' of the appalling unnecessary suffering of hundreds of people. A lack of care, compassion, humanity and leadership. The most basic standards of care were not observed. I was one of those 250 witnesses that gave evidence on oath. Trying to give my mum a voice. The voice she no longer had.

A report to the majority, something that happened to other people. One of those other people was my mum, Ellen Linstead. 

Fast forward to August 2019. 

A family anxiously enter a hospital setting, worried, a little scared as memories come flooding back. A conversation in a small room, information given, scans, test results, questions answered, time given freely, wonderful communication. A consultant and clinical staff working together to ensure everything is relayed precisely and extremely clearly. Reassuring for this family. 

An elderly gent is in a hospital setting, in a side room, in a hospital bed. Outside of the door, life is busy carrying on in this hospital ward. The sounds of that ward intermittently seep into the side room of this patient, bringing back stark memories that this family have for many years, and will always struggle to live with.

This elderly gent is Tom Linstead. An 83-year-old who has spent the last 13 years of his life desperately missing his wife Ellen. A father, brother, grandfather, uncle, husband, now widow. A life spent well, full of love and kindness. As a man there was no better. One of his family members sitting beside him is his daughter. This is her experience.

As I look down my hand seems small holding gently the larger hand it has held for many decades. A lifetime of memories are captured in that moment of hand holding. A daughter is sitting close to her elderly father and she is cradling his hand in hers. A tear falls from the father's eyes as his breathing becoming more laboured with each breath. The father opens one eye and looks at his daughter, their gaze held for a few moments, much is said in that last look between a father and his daughter, it is to be the last time they communicate. A precious moment that they both know will need to last for eternity. The elder gent is in a Staffordshire hospital setting, a hospital bed, at end of life. The daughter says very gently to her dad, mum's waiting, you can go to her now. Hug her from me, tell her I miss her, I love you and will carry you both in my heart for always.

Then the breathing is no more, the room is still apart from the daughter who holds her fathers hand tightly now. Thirteen years of tears and emotion overspill into the room. This father and daughter have survived every day of the last 13 years by taking some days one hour at a time and loving each other with all their heart and soul.

Thirteen years previously the same family had sat with a deceased lady who had died in heart-breaking circumstances, suffering unnecessarily before dying. These memories have walked shoulder to shoulder with this father and daughter, never leaving them. Inner peace lost, lives changed for always. Hopes and dreams for the future crushed. This wonderful lady died tragically at Mid Staffs in 2006.

After his wife’s death this gent surrounded himself with his family, becoming the centre of their world, but never really being able to truly live after losing his wife and soul mate in such a distressing way. Visitors pass by his room door, busy staff supporting patients. Catering staff are once again doing their rounds offering food and fluids to anyone who would like them. The atmosphere is calm and friendly and incredibly professional. There are no shouts for help unanswered, no buzzers ringing out for lengthy periods. The daughter cannot help but contemplate how different that last decade and beyond of her life would have been if her mum had been on this ward, in this room all of those years ago, and things may have been so different. These thoughts bring tears to the daughter’s eyes.

The nursing staff are professional, incredibly supportive and kind. They smile knowingly at the family as they pass to and from their loved ones side room. The consultant has entered the room several times over several days and asked if Tom and his family need any further support, do they have any questions, do they need absolutely anything?  He advises he is on the ward and if they need anything please do not hesitate to approach him. If he is not on the ward he is always contactable, and they should not hesitate to do so. This kindness gives the family so much comfort, the reassurance that their dad matters, and so do they. It is difficult to really put into words, but so important that they are put into words and shared. Final memories are so very important, they remain with family members for all time. End of life final experiences for patients and their families are just that, final, not able to be repeated. Its why in my humble opinion they are so important to be supportive, peaceful memories for all.

Healthcare assistants, nursing staff and catering staff enter the room at various times, very quietly, they support the patient and his immediate loved ones sitting around his bed. Personal care is attended to, pain relief, full explanations of what is and will happen is given, so very reassuring for the emotional worried faces siting around the bed. Everyone is supported. The ward is clean, the side room spotlessly clean, comfy chairs are available around the bed, family are told they are able to stay, come and go as they wish, there are no visiting time restrictions. This is a setting in which a patient can spend their final days, hours , with dignity and respect.

Tom is in The Royal Stoke University Hospital of North Midlands Trust, which also now runs Stafford Hospital, now known as County Hospital. He has a Purple bow at the end of his bed and on the front of the door to his side room.

The Purple bow scheme identifies patients coming to the end of their lives. The bow is a visible sign for all that this patient and family need ongoing support at a very emotional time. It quietly and respectfully signals to everyone that they need to be mindful and respectfully ensures everyone is aware and understanding around the patient and their loved ones whilst they are nearby.

A small pack is also given to the family with vital information enclosed, letting families know what extra support is available. The very visible signage can also be used in a ward setting. Tom had a purple bow follow him to a side room after being on a ward for a short period. It was somehow extremely comforting to the family that it followed him. 

Food and drinks are continually offered to the immediate family, they are made to feel that they are also being cared for, looked after to enable them to continually be with their loved one. An empathetic smile from passing staff, a nod from others, ongoing acknowledgement that the family are not alone. It again brings the daughter to tears, this is how it should be for everyone.

The daughter is me, Deb Hazeldine. Thirteen years ago, without even knowing I became a patient safety campaigner after losing my mum in the Mid Staffs disaster. I have given my mum a voice over many years, and now I will try and give my dad a voice also.

Thank you to all of the staff at the University Hospitals of North Midlands NHS Trust (UHNM) for their wonderful support. The end of life, palliative care team, ward 102 and SAU. Your professionalism, your kindness will never be forgotten.

My dad received exemplary end of life care. Your staff also cared for me and my family. For me this meant so much because to this day I struggle to be in any clinical setting.

Thank you to the hospital chaplains, you gave so much comfort at a time when it was most needed.

Death comes to everyone; however, it’s how you die and the memories you leave with your loved ones. Thank you for ensuring my dad’s final days were peaceful and dignified. I cannot say how much this means, to be able to retain peace during and after my dad’s death. 

Thank you.

Both of my parents died in clinical settings in Staffordshire, over a decade apart. Memories of one haunt me to this day, another gives me peace.

So very many people have, and continue to, work incredibly hard to ensure lessons have been learned from Mid Staffs. Thank you to each and every person that is ensuring myself and my family continue to have ongoing hope for the future. Having lived through the troubled times at  Mid Staffs, I have to date never entered a clinical setting that was anything like that time. 

Patient safety is an ongoing journey and change can often feel frustratingly slow; however, I feel it is disingenuous to state absolutely nothing has changed since the Francis report, because in Staffordshire it has. How terribly disheartening for all dedicated staff to not know how much this hard work is appreciated. As I have stated many times, the NHS’s best asset are its dedicated staff. From myself, my Dad and my family, thank you. It does not go unrecognised and will never be forgotten.

Within the Francis reports, enclosed in the pages are learning for all staff, and also so very importantly precious loved ones and their final weeks, months, days. To know that these reports have been acted on, taken to heart by Staffordshire healthcare settings is a fitting tribute to all who died too soon.