The Patients Association was founded in 1963 and continues to listen to patients and speak up for change.

Issue 144

Keeping you informed about the latest developments in Health & Social Care

PHSO refuses to investigate baby death at heart of ‘regulatory gap’ claims

The Parliamentary Health Service Ombudsman (PHSO) has refused to investigate the death of a baby at the centre of claims of a ‘regulatory gap’ between national bodies preventing them looking into historic complaints.

Since November 2014 when the Patient Association released a report on the failings of the PHSO, the charity has been inundated by calls, emails and letters from patients, families and representatives that have felt let down by the PHSO.

The parents of baby Elizabeth Dixon, who died in 2001, told the Health Service Journal that their experience of the PHSO process had been a nine month “nightmare”, with the ombudsman eventually accepting it was incapable of investigating all aspects of the case.

Elizabeth, who was born prematurely, was left with permanent brain damage after hospital staff failed to monitor or treat her high blood pressure over 15 days. Almost a year later, a newly qualified nurse failed to keep the babies’ breathing tube clear, resulting in her suffocating to death. The cause of her brain damage was only confirmed in 2013.

In October 2014 the ombudsman Dame Julie Mellor said the PHSO would act to close the gap and would consider serious historic cases, despite its usual 12 month time limit. However, it has rejected the Dixons’ complaint.

Katherine Murphy, Chief Executive, and Patients Association, said:

“We have identified that patients feel completely let down by the PHSO; who overlook or ignore evidence, take far too long to communicate with families, are dismissive and insensitive and leave patients feeling that they are in the wrong for raising a complaint.”
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The Patients Association’s motto is ‘Listening to Patients, Speaking up for Change’. This motto is the basis on which we build all our campaigns. Via our Helpline, we capture stories about Healthcare from over thousands of patients, family members and carers every year. We use this knowledge to campaign for real improvements to health and social care services across the UK.
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Cancer Drugs Face Axe in NHS Cost-Cutting Move

Charities warn the cuts - the second round this year - will deny patients access to life-extending treatment. 

A new round of cuts to NHS cancer treatments are to be announced, which seems to be in contrast to the £160m boost towards the Cancer Drugs Fund just over a year ago.
NHS England is meeting pharmaceutical companies this week to tell them whether their medicines will remain on the Cancer Drugs Fund.

The fund currently allows patients to access 37 drugs that are not routinely available on the NHS in England.

More than 20 treatments were removed or restricted in January in an attempt to rein in on an over expenditure of almost £100m.

Over 76,000 patients have had their lives extended since the Cancer Drugs Fund was established in 2010 to make new drugs available while they are assessed by the medicines watchdog, National Institute for Health and Care Excellence (NICE).

From April next year the fund will be completely overhauled, with drugs only allowed to remain on the list if they are proven to be effective in the 'real-world' of the NHS, not just clinical trials.

This report undermines the findings from the study published last month by Cancer Research UK-funded scientists which stated that overall, the proportion of patients living for five years after diagnosis for all six cancers was 5 per cent to 12 per cent lower in England than it was in Australia, Canada, Norway and Sweden; when the same time periods were compared.

Katherine Murphy, Chief Executive, and Patients Association, said:
 “Our poor performance on cancer survival compared with other leading countries is well-known and continues to be a concern. It is also worrying that a UK citizen appears to have a significantly lower chance of surviving cancer than people from other parts of Europe.”


Number of A&E consultants in hospital halves at weekends, according to report

The number of senior doctors on duty at weekends in hospital A&E departments is about half the level of cover during the week, according to a report.

Our recent report on hospital waiting times report demonstrates a wide variation in waiting times across England, with the post-code distribution as stark as ever. Overall, we are seeing increasingly long waiting times for these procedures.

The Health Secretary, Jeremy Hunt, is seeking to introduce changes to consultants’ contracts to create a seven-day service. If the British Medical Association (BMA) does not agree to the changes, Mr Hunt has said he will impose a deal on new consultants ending the “opt-out” for non-emergency work at weekends.

Katherine Murphy, of the Patients Association, said:

“Patients cannot pick and choose when they fall ill and doctors should not be able to pick and choose when they work.

For many years our accident and emergency departments have been under severe strain and have struggled to meet the needs and expectations of patients. People are at their most vulnerable when they are seriously ill or injured, and high quality, well-run emergency care needs to be available 24 hours a day, 7 days a week.

Unless we see proper investment in acute and emergency care, vulnerable older people, children and those with multiple health and social care needs will continue to suffer. There must be effective joined up thinking between health and social care, and we must see real


Older people put at risk as watchdog fails to act on warnings of 'fatally negligent' care homes

An investigation from The Independent revealed that residents at a Care Home were put at risk because the Care Quality Commission (CQC), responsible for regulating within the NHS failed to act on official warnings about the poor standards.

The Care Quality Commission has admitted its response to the warnings had “not always been consistent” and was working to improve the situation.

David Behan, chief executive of the CQC, said: “I am not going to defend the indefensible. We have got more to do.”

In one case, a coroner found nursing home staff had failed to recognise that an elderly lady was “acutely unwell” because they were not properly trained.

This report highlights the importance of the way in which the CQC prioritises inspections and acts on information it receives.

It is not an obligation for the CQC to inspect every case, however there are a range of options available in dealing with these types of warnings.

Katherine Murphy, Chief Executive, and Patients Association, said:

“Where poor care exists it is obviously important that we seek to detect it and take action. But it is even more important that we tackle the problems that allow poor care to take place in care homes.
Caring for the sick and elderly is a vital function in our society, and as such should only be carried out by those with the skills, personality and temperament to do the job well and with compassion, ensuring the dignity of those for whom they are caring.

When adult care services are being commissioned, the key focus must be on the quality of care that will be delivered, and not the quantity of patients that it will be delivered to.

There should be a clear line of accountability so that those care providers that are not doing enough to ensure that care is of high quality are held to account. This, along with an improved regulatory regime with in depth inspections at its core, will drive up standards of care in our care homes.”


 A Patient's Story

After having suffered from vomiting over a 6 month period, Ms A went to her GP for investigation. Ms A explained that she had a history of vomiting and was told that it was possible that she had a bug. 

Ms A could not recall whether she had any other investigations performed in the past, she went to the surgery and was told that it could be Gastritis and was offered a prescription to treat this.  The diagnosis was guessed by the GP and only after Ms A insisted that this needed to be confirmed by a proper investigation, the GP had agreed to refer Ms A to the hospital for an investigation. 

Less than a week later Ms A vomited yet again, she contacted the NHS helpline which suggested that she call an ambulance.  Ms A was taken to the hospital by ambulance and stayed at the hospital all day.  Ms A told the doctors that an investigation was planned and upon hearing this they decided not to investigate her symptoms thoroughly.

The following night the symptoms became worse and a friend took Ms A straight to hospital again.  This time the doctors realised that something was very wrong as her blood samples indicated this.  Eventually Ms A had a scan which confirmed gallstones, resulting in her stay in hospital for 7 days.

Ms A praised the nurses at the ward, who were kind and attentive. However, Ms A was in a cancer ward due to lack of space and a mixed sex ward, which she did not find to be pleasant.  Ms A could not eat the first few days and lost her appetite after receiving her first meal.

Ms A said that her GP was receptive when she asked him to write a letter to make her case urgent, which she presumed led to her having the operation. Ms A was very grateful to her GP for the letter, however she was concerned about the difficulty she had in obtaining the correct diagnosis, and feared whether this would happen to someone else.
Ms A recently contacted our helpline and is currently receiving advice from us.

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