Monthly Archives: February 2014
The National Institute for Health and Care Excellence (NICE) is currently seeking community members to join the committee developing guidance on community activities or services which improve people’s health or wellbeing.
NICE produces guidance on the most effective ways to prevent, diagnose and treat disease and ill health, and provide social care support.
Community members are paid a fee to attend meetings, and travel and other expenses are covered.
The National Institute for Health and Care Excellence (NICE) has been accused of “playing fast and loose” with the lives of cancer sufferers following the announcement that thousands of men with prostate cancer could be denied life-extending treatment following a U-turn by the NHS rationing body.
Each year more than 40,000 British men are diagnosed with prostate cancer. More than 10,000 develop an advanced form of the disease which resists standard hormone treatment and chemotherapy and most will die within five years, making the disease the second most common cause of cancer death in men.
Trials found that the drug Xtandi® on average gave patients an extra five months of life – bringing their survival to 18 months. Three months ago NICE ruled that the drug would be made available to those with cancer which has spread beyond the prostate, and stopped responding to treatment, after the manufacturers agreed a discount on the £25,000 per patient price. But the watchdog has now issued new restrictions, which mean that the NHS will only fund the drug if men have not tried the only other drug available for such cases.
Owen Sharp, Chief Executive at Prostate Cancer UK, said Nice had acted in secrecy, and had given no explanation for a “blatant U-turn” which will cost lives. He said, “Nice is playing fast and loose with men with prostate cancer in the advanced stages of the disease who may become resistant to other treatments, and what’s worse without saying why.”
Last week Prof David Haslam, the chairman of Nice, said British patients should be more assertive in ensuring that they obtain drugs which the watchdog has backed, and learn from the attitudes of Americans, who were more likely to see themselves as equal partners with their doctors
Nice said it changed its recommendation because of responses to its consultation, and because trials on Xtandi® did not include patients who had previously received the standard treatment of abiraterone, leaving them unable to draw conclusions about its effectiveness in such cases.
The Health Service Ombudsman, the body with ultimate responsibility for complaints against the NHS, has been accused of failing thousands of patients and bereaved relatives after admitting it fully investigated less than 400 of 16,000 patient complaints made last year. The watchdog’s own records disclose that during the year 2012/13, less than 3% of complaints which came to them were fully investigated.
In the vast majority of cases, those seeking help were told that an investigation would not achieve anything, that there was no case to answer or that they should return to the organisation which they said had failed them to argue their case.
Professor Sir Brian Jarman, emiritus professor of Imperial College London, said:
“It’s an appalling situation. These complaints – which we should treat as ‘gold dust’, because they are the lessons we need to learn to prevent future tragedies – are being virtually ignored and thrown away.”
In response, a spokesman for the Ombudsman said:
“We changed our criteria for investigating complaints last year. We now always begin our consideration of a complaint about potentially avoidable death with the assumption that we will investigate. In fact, if any complaint meets some basic tests, we will usually investigate it. These changes were prompted by feedback from people whose complaints we had not investigated.”
A huge central database called Care.data due to be launched after April will enable experts to assess diseases, examine new drugs on the market and identify infection outbreaks as well as monitor the care patients get. Information is already available about what happens in hospitals, but to date it has been difficult to link those records with the information that was available about what is happening to patients when they are discharged back to the care of their GPs.
Just last month NHS England started a mass mail-out to every household explaining the project and giving people the chance to opt out. However, people were struggling to understand what it was about and there have been cases where GPs have decided to opt out all their patients themselves.
Concerns have been raised about the prospect of keeping all of the information in one place, with campaigners saying that it could lead to privacy problems and data breaches. There is a proposal, to be discussed next month, which could give access to non-NHS bodies, including private firms.
Dawn Monaghan, of the Information Commissioner’s office, also said she had concerns:
“At the moment, we don’t think it is clear enough on the website or in the information that has been sent out exactly what data is going to go and what is not going to go.”
But Tim Kelsey, NHS England’s national director for patients and information, said patients need not have concerns as the information would not be “identifiable”.
The chairman of the Care Quality Commission, (CQC), David Prior, has said that the NHS in England has a culture that “doesn’t listen” and that the NHS could go bust without “serious change”. The head of the health watchdog called for more competition to drive up standards, adding that rifts between managers and clinicians were jeopardising patient safety and blocking improvements in care.
Writing in the Sunday Telegraph, Mr Prior said, “Parts of the NHS have developed a culture that doesn’t listen – or worse, that stigmatises and ostracises those who raise concerns or complaints.”
“Too often, it delights in the ritual humiliation of those deemed to fail, tolerates and institutionalises outdated working practices and old-fashioned hierarchies, and can almost encourage managers and clinicians to occupy opposing camps.”
He called for successful hospitals to take over failing hospitals and community services, and for better care outside hospitals, and for larger centres of excellence.
He also called for changes to the way the NHS is held to account – particularly an end to trusts being “blindsided” by waiting time targets “that miss the point, skew priorities and have unintended consequences”.
Katherine Murphy, chief executive of the Patients Association, agreed with Mr Prior, saying,
“There is a culture in the NHS where process comes before humans. For years we’ve tried to highlight concern about poor care. We’re often seen as a nuisance for highlighting these issues. The behaviour and culture that was allowed to grow in Mid Staffordshire is no different from that in many trusts in many parts of the country today.”
The Department of Health said it was “focusing on poor care like never before” and was turning around 14 hospitals that are in special measures. A spokesman said, “We are clear that targets must never come before clinical need – and based on clinical advice, we have scrapped a number of them.”
It is exactly 12 months since the report of the full public inquiry into the failings at the Mid Staffordshire Foundation Trust was published on 6th February 2013. The inquiry, led by Robert Francis QC, looked at the role of commissioning, supervisory and regulatory bodies and why serious problems at the trust were not identified and acted on sooner.
In all, 290 recommendations were made by the Francis inquiry which set out a clear blueprint for the creation of a care system which ensures that the safety, dignity and well-being of patients is paramount. The Patients Association made it very clear at the time that it was vital that the recommendations were implemented swiftly and comprehensively; indeed, we are the only organisation that has been consistent in our arguments that the recommendations made by the Francis Inquiry should be implemented in full.
In response to the Francis inquiry, the Government set about implementing a series of further reviews which covered three key areas of concern: patient safety, patient experience and regulation
Whilst we welcome the findings of the various reviews and reports, it is now time for action. It is becoming increasingly apparent that those who run the NHS are reluctant to take the radical steps demanded by the Francis inquiry. We all know what needs to happen: regulation of healthcare assistants, a reformed complaints system, improved training and a properly funded and structured regulatory system. It is time for the government and NHS England to deliver action. We have been saying for many years now that the need to listen to patients, involve them in their care, value staff and for trusts to work together rather than in isolation are all key elements to ensure that standards improve and unnecessary deaths are avoided.
There is still a lot to change. There is a culture in the NHS where processes precede patient care. For years we have tried to highlight concern about poor care despite often being seen as a nuisance for highlighting these issues. The behaviour and culture that permeated in Mid Staffordshire could well be found in many trusts in many parts of the country today.
Ultimately, we believe that patients who use health and care services have the right to be treated with respect, dignity and compassion by staff who have the skills and time to care for them. We must:
1. Put patients (and their carers) first in decisions about their care
2. Help staff to be competent and provide care with dignity and compassion
3. Keep patients and service users safe; encourage whistle blowing where
unsafe care is being practiced
4. Have easy and accessible mechanisms for ensuring patient feedback
through complaints – lessons to be learnt
5. Create open and transparent cultures which are free of blame
A copy of our full response to the first anniversary of the Francis Report can be found here.
Do patients really have a choice?
The British Medical Association (BMA) held an event this week to celebrate the 10th anniversary of their Patient Liaison Group. The event brought together past and present members of the group, along with BMA committee Chairs, representatives from external patient groups and senior BMA staff.
The meeting aimed to provide the BMA with informed and independent advice on the issue of patient choice in the NHS. Dr Mike Smith of the Patients Association was invited to speak at the event along with a representative from Healthwatch England.
Dr Smith highlighted some of the problems that patients have in making an informed choice about their care, and the barriers to obtaining the health care that they want. Patients today expect, and deserve, a variety of choices when it comes to accessing health care from the NHS, and the “Choose and Book” website was set up to enable patients to make this a reality. However, many patients find that there isn’t actually a great deal of choice available (and sometimes none). Furthermore, even when choices are available, patients are finding it difficult to make an informed decision.