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The Patients Association annual Patients Stories report

The Patients Association has this week published its fifth annual Patients Stories report, Time for Change, a series of 13 case studies highlighting shocking examples of poor care in NHS hospitals and care homes across the country. The stories have been contributed by patients, or patients’ families, who have contacted the Patients Associations’ Helpline over the past twelve months.

Several stories included in the report are examples of how an inadequate complaints system, similar to that used by many trusts across the country and highlighted in both the Francis and the Clwyd/Hart review, can impact upon patients and their families who do not feel that they have received the correct level of care in their NHS hospital.

The cases in this year’s report indicate the need to implement the recommendations of the Inquiry into Mid Staffordshire led by Robert Francis QC, the new President of the Patients Association. Cases featured in this report include:

  • Eighty four year-old Olive Burns, who was admitted to hospital thinking she had fractured her hip, but whose condition soon deteriorated so dramatically that her family believed she had been placed under the Liverpool Care Pathway, only to discover that nurses had apparently forgotten to treat Olive over a busy bank holiday weekend.
  • Averil Hart, a nineteen-year old student, who suffered from anorexia. Upon release from hospital, her care plan stated that she was at high risk and her family assured of close and regular monitoring. Neither of the two NHS teams responsible for her care communicated with each other or performed regular health checks on Averil who died following a severe relapse and without the care she so badly needed.
  • Andrew Brown, who was shocked to discover that, after making a formal complaint about the treatment he received at Worcester Hospital, he was labelled a ‘vexatious complainant’. He had been complaining about being discharged from the cardiology team despite needing a follow up appointment for heart palpitations.
  • Annie Carroll, whose family remain unhappy with the treatment she received, yet the hospital she stayed at has, at the time this report was published, yet to formally investigate any of the family’s concerns and provide them with a detailed response.
  • Elizabeth Flood, who was admitted into Northampton General Hospital with a fractured shoulder and later discovered to have a fractured neck, after a fall at home. When Mrs Flood was transferred to a care home, staff there refused to help her eat or drink and asked her husband to come in to feed her instead. She developed bed sores and was admitted to A&E only after a hospital consultant noticed her frail appearance.
  • Stan Norman was refused NHS continuing healthcare services because he “wasn’t terminally ill”, even though he suffered from end stage kidney disease and loss of mobility, which had being brought about by a preventative operation.
  • Patient A felt that the information she received about her breast cancer treatment was not open and transparent, which led her to use valuable recovery time to check her medical records because she was “so concerned about the muddled information I had received”.  Her fears were then increased when she discovered a tissue sample that had been sent to the lab after her surgery had been handled so poorly that is prevented a proper analysis taking place.
  • John Munday moved in with his niece after being diagnosed with advanced lung cancer, thinking he would be able to receive the right ‘out of hours’ care. Unfortunately, in the last few weeks of his life, the OOH care he received “made life extremely difficult, painful and unpleasant”.
  • Gloria Mary Butcher’s daughter was told that her mother was being discharged from the hospital she had been treated at 11:10am, but did not return to her care home until 8:10pm, despite the home telling the hospital not to return her after 7pm. Gloria’s daughter feels that trying to track her mother, a dementia patient, during this period was “like trying to track a parcel in transit”.
  • Patient B, who has the mind of a child, was admitted to hospital after suffering from four seizures. Her relatives feel hospital staff did not listen to concerns about their sister’s condition and report that she was repeatedly left alone with food and drink despite having problems eating and swallowing. Patient B was discharged but needed to be re-admitted some months later. Her family was concerned to note that the issue of poor communication was not addressed despite making a formal complaint.
  • John Moore was diagnosed with an aggressive brain tumour, but experienced a critical delay before he was able to receive urgent surgery, due to a junior doctor failing to make a critical referral. On the night before the surgery was meant to take place, Mr. Moore was wrongly told he had a life expectancy of 1-2 years. He sadly died four months after the operation.
  • Doreen Hadfield believes that the hospital her parents Herbert and Irene Boswell were being treated at “failed in its duty of care for elderly patients” after witnessing the treatment her late father and mother received, including not being told her father did not have long to live and her mother, who suffers from dementia, being discharged in only her nightgown, and does not believe that lessons have being learnt, despite making numerous complaints.
  • Lynne Hambleton, a qualified nurse, is ashamed of her profession after witnessing the poor care her mother, Edith Jamieson, received which included having to go without food or drink for long periods and not being assisted with toileting because her blindness and confusion prevented her from using the call bell.

Katherine Murphy, Chief Executive of the Patients Association, said:

“This is our fifth annual collection of patient’s stories. The first was written in the fevered atmosphere of the run up to the General Election. The next three were produced against the backdrop of colossal upheaval as the Health and Social Care Act made its way through the parliamentary process and then the year before its implementation.
“But I believe that this fifth report, published in our fiftieth year, comes at the end of one of the most tumultuous periods in the history of the NHS. What a year 2013 has been, with ramifications that will stretch for decades.
“The publication of the recommendations of the public Inquiry into Mid Staffordshire was swiftly followed by the coming into law of the NHS reforms. Then we had reviews by Keogh, Berwick, Cavendish, and Clwyd/Hart. Alongside this came the news that the NHS is facing a potential £50 billion black hole over the next twenty years.
“At the heart of these times of upheaval are patients and relatives. They don’t want to hear about reviews and finances, and they don’t want to know any more about the reforms. What they want more than anything else is an NHS they can trust, and when they or a loved one will need it, they will be treated with compassion and dignity and cared for appropriately. Every NHS manager, decision maker and policy proposer in and around the NHS needs to remember that patients today have the same anxiety and fear they have always had, but that it has been worsened by the failings at Mid Staffordshire and the number of poor performing hospitals that have raised concerns and the Care Quality Commission have had to inspect as a priority.
“This year’s collection of stories is different to those that we have used before. In previous years the focus of these reports, and our CARE campaign, has been on the care of the elderly. This remains a concern, despite the huge amount of hard work that is happening to improve care in this area.
“This year the focus is on what could be the single biggest development in healthcare since the launch of the NHS plan over a decade ago- the publication of recommendations of the Inquiry conducted by
Robert Francis QC into failings of care at Mid Staffordshire. We are delighted Robert Francis is now our President and will help us all as we strive for a more honest, open and transparent NHS.
“It is the opinion of the Patients Association that the recommendations that the Inquiry put forward are a comprehensive blue print for a safer, more caring NHS.
“Each and every case contained in this report should make the Government think again about its position. Each could potentially have been prevented if the Francis recommendations had been enacted in full.
“The Patients Association has had one simple message for the Government since the recommendations were published – don’t let patients down any further, please agree to implement the recommendations in full.

Robert Francis QC, newly-appointed President of the Patients Association, said:
“The experiences of patients and relatives remain the best way to detect care that is being delivered without care and compassion.

“Let us all hope that in the near future we will stop having to listen to disturbing reports of poor and unsafe care in many different places and instead be looking at a service which has learned from the mistakes, and has ensured that the excellent practice we know exists has become the norm. If we are to achieve this, we need to keep listening to experiences such as those contained in this report.”

Introduction to the report:
The aim of this report remains the same as it has always been, to amplify the voices of individual patients to highlight wider trends.

But this year there is a difference. Ordinarily we would publish a collection of stories and then a series of calls to action which we felt would improve the care that patients receive. But this year those calls to action already exist. The recommendations of the Francis Inquiry point the way forward for the NHS, and we call on the Government to commit to adopting them in full, with a timetable for doing so.
For those few readers who won’t already know, the report, which was published in February of this year, identified numerous warning signs which were missed. The Inquiry believed that this was caused by:
• A culture that doesn’t put the patient first
• An institutional culture that gave more weight to positive information about the service than to information that could cause concern
• Failure of communication between agencies to share their knowledge of concerns
• Too great a tolerance of poor standards and of risk to patients
• Assumptions that monitoring, performance management or intervention was someone else’s job
• A failure to appreciate the risk of disruptive loss of corporate memory and focus resulting from repeated reorganisation
With 290 recommendations made by the Inquiry it is just not possible to analyse them all here.
However we would identify the key themes to be:
• Foster a common culture shared by all of putting the patient first
• Develop a set of easily understood fundamental standards that should not be breached.
• Make sure all those that provide care for patients are regulated and properly accountable for what they do
• Ensure openness, transparency and honesty about matters of concern
• Strengthen the regulatory system
• Enhance the recruitment, education, training & support of all key contributors to the provision of healthcare
• Improve the complaints system

At the time of the report’s publication the Patients Association was cautiously optimistic about its findings, with our Chief Executive Katherine Murphy saying “We welcome the report. It’s a comprehensive review of nearly every aspect of the NHS, and when it is such a key part of all of our lives, patients and carers deserved nothing less. This is a watershed moment for our health service.
It will take time to digest all of the findings and 290 recommendations that have been made. But it is clear that he has understood some of the very real failings that patients and their families face day in and day out. He (Francis) has recognised what we hear on our Helpline every day – too many parts of the NHS have lost their way and forgotten that care and compassion should be at the heart of what staff do.
He wants to give nursing a powerful voice. He wants the ward sister back in charge and we welcome that. The concept of a registered older peoples nurse is a great idea and should be wholeheartedly pursued. Whilst he recognises it will take some time to implement, he has seen that there can be no other option but to regulate healthcare assistants. The Government has been wrong to resist this idea.

“We have always believed good complaints handling can do so much to improve our health service.
We need standards, we need more independence and we need to empower and support patients and carers when they highlight poor care. It is clear from the report that there is a lot of blame to go around for what happened in Stafford. Unfortunately too many people have escaped genuine accountability. But it’s important now to focus on ensuring the Government doesn’t play politics with this report-they need to focus on making the most of this unique opportunity to improve the NHS for all our benefit.”

“Since that time it has become clear to us that each of the recommendations has merit and the Government should commit to implementing them in full.
But unfortunately it has not done so. Instead the Government has commissioned a series of further reviews. Some, such as the Keogh review of trusts with higher than expected mortality rates, are vital for patient safety and have a great deal of merit. The Patients Association was proud to have been involved, and fully supports the work that has been done to tackle areas of concern.

“But others seem deliberately designed to water down the recommendations of the Francis Inquiry. The Cavendish review, for example, failed to follow the lead of the Inquiry and propose a proper system for the regulation of Healthcare Assistants. The Complaints Review, whilst painting a positive picture of what can be done to improve the complaints system, stops short of taking on the structural change that it clearly needs.
“Perhaps the biggest disappointment was the Berwick review. At the Patients Association it continues to remain unclear to us exactly why a further review of the Francis Inquiry was needed. The findings and sentiments were hard to disagree with. However the lack of solid proposals and a road map for true change was extremely disappointing. As we said at the time “At the moment nobody knows what will be in the report and as such it is difficult to comment on speculation. However we would be extremely pleased if Professor Berwick agrees with Francis and suggests that Healthcare Assistants should be regulated. Everybody knows that this has to happen as quickly as possible and shouldn’t be delayed because it is considered too costly or difficult to introduce. We would also welcome the introduction of minimum staffing levels on the ward.

“Healthcare professionals, patients and relatives are constantly contacting our Helpline to tell us that they don’t think that the wards at their hospital have sufficient numbers of staff to keep patients safe, and this problem has to be addressed. We would also welcome the rumoured new onus on individual candour. Everybody working in the health service needs to understand the importance of openness and transparency.

“What we need to see from the report is a clear blue print for implementing Francis, not more platitudes and acknowledgement that things went wrong. The goal has to be to move towards an open, honest and transparent NHS where everybody is accountable for their actions. This has to be across the whole system, including primary care and a vital step towards achieving it will be a complete change in the culture of the NHS and the way professionals interact with patients and relatives.

“For an NHS that is truly safe and transparent we also need for patients to be able to access meaningful data about performance and patient safety records, as well as infection rates on individual hospital wards. Above all we need to see a clear distinction between the need to cut costs and manage finances, and the need to ensure that patients remain safe.

“We all know that the future facing the NHS is one of great opportunity which can only be viewed through a prism of financial challenges. The Patients Association acknowledges that implementing the Francis Recommendations will be neither quick nor free of financial difficulty. But once the short term pain has been overcome we are confident that the long term gain of an NHS which has the safety and dignity of its patients at the centre will have made it seem very worthwhile.”

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