Putting patients first

“No decision about me, without me.” So says the government’s white paper on health, Equity and Excellence: Liberating the NHS. According to the government, this means a new shared decision making model with patients at the heart of healthcare. Our work suggests this is particularly urgent in infection control.

The Patients Association’s history of high profile work involving healthcare associated infections (HCAI) started over five years ago when our President, Clare Rayner, wrote in a major newspaper about acquiring an MRSA infection. Following this, we were overwhelmed by a deluge of letters, phone calls to our helpline and e-mails from patients and carers wanting to share their experiences. This has provided a rich source of information from which we have shaped our activity on infection control.

Best practice
Using this evidence provided directly from the patients and carers affected by HCAI, we developed media activity with Clare leading from the front. With national press coverage, this helped place the issue of HCAI firmly on the agenda of the NHS. The Patients Association held three national summits on the issue and ran several surveys, including one with infection control nurses which highlighted their struggles in trying to get all staff to adhere to the very best of practice.
    
The infection control campaign became more media driven than any other healthcare area. The media pressure clearly helps to generate action and results. However, the issue of infection control remains in the news with a new so called superbug, prevalent in the Indian subcontinent, and infecting people coming back to the UK. This is a new front in the fight against HCAI – but there is also news that existing infections remain a difficulty for hospitals with 12 per cent of Foundation Trusts declaring themselves at risk of missing targets for MRSA and
C. difficile infection.

In the midst of this news, and worries about budget cuts, it is crucial that we do not forget the terrible impact of HCAI on patients’ lives. We believe that patients should remain at the forefront of infection control in
the health service.

A strong patient voice
Patient voice and feedback is always important and the proposals in the government’s white paper attempt to tap into this. The government proposes an “information revolution”, with a vast expansion of the use of patient-related outcome measures (PROMs) and patient surveys, as well as an expansion of patient choice to include both GPs and consultant-led teams. By using patient feedback and choice it is hoped that patients will drive up the standards of care received by all users of the health service.

To achieve this, however, the information collected must be meaningful for patients and the public. The Patients Association wants data, not on Trust level but on ward or department level. This includes asking questions such as: “What infections did you have on your ward or department this week?” not just measuring MRSA and C. difficile.

Counting MRSA and C. difficile alone, will not help patients and the public make effective choices. The last National Audit Office report (in 2009) on infection control identifies other key barriers to infection control such as a lack of information on antibiotic prescription and patient records. So along with information on infection rates and treatment provided we want to see the following data made readily available to patients: clinical outcomes of individual consultants and their teams; staff-patient ratios, the skill mix of staff on wards; complaint numbers and what these complaints were about; risk assessment of complaints; and outcomes and experience for patients.

Furthermore, the information revolution is already occurring – the younger generation’s greater use of the internet means they have better access to information and awareness of their rights in terms of healthcare. Therefore they have greater expectations of healthcare services and demand the very best clinical practice to be carried out and by experts in the field. With time, this will hopefully drive up standards in healthcare.

The Helpline
With the increase in media coverage of hospital infections, more and more people decided to voice their concerns to The Patients Association Helpline. The helpline is a port of call for people with questions and concerns about their healthcare – through this we see patients not just as numbers but as people with lives and experiences, some of which have been drastically altered as a result of avoidable HCAI.

HCAI is an area where many patient-centred issues converge – including dignity, listening to patients, and keeping patients and families informed. These concerns have appeared time and again in the HCAI context: last week a caller whose partner was not screened for MRSA on admission to hospital went on to develop an infection. The hospital denied any responsibility for this and maintained that the patient could have arrived at the hospital already positive for the bacteria. It seems incredible that the hospital tried to rely on their failure to screen the patient as justification for blaming the patient for carrying the infection into the hospital environment. This sort of example shows the disregard for patients by hospital staff, that is unfortunately still commonly reported to us.

Adding to the problem
What the helpline also shows us is how HCAI is linked with other health problems. People have often called with a concern about a separate area of care, and have said that poor care in this area meant that they acquired an infection at hospital or in a care home. Two particular examples are bed sores (pressure ulcers) and incontinence.

Bed sores are unfortunately commonplace. Approximately 412,000 people develop a pressure ulcer annually in the UK and research carried out by The Patients Association shows that care and staffing levels vary massively according to a patient’s location. One third of Primary Care Trusts (PCTs) had no information about pressure sore incidence, and acute trusts showed a tenfold difference in incidence in hospitals with the same staffing level. These findings confirm what our helpline tells us – staff are stretched so thinly in some areas that patients sometimes go without essential attention to their needs.

Incontinence has a similar picture of variable care as reflected in the complaints to our helpline. Last year, we published a series of accounts of patients who had suffered poor care. One of the patients was told that, because of a lack of continence facilities, she would have to wet the bed. Another patient’s family noticed that toilets were not cleaned. If left unaddressed, these problems can contribute to the breeding environment for bacteria. Simple measures – universally applied – which consider patients as people and listen to their needs, would avoid such serious violations of dignity and prevent the cost of treating large numbers of HCAI.

Focus on patient safety
At The Patients Association our focus remains on patient safety. This is the driving force behind a number of our campaigns – such as those addressing complaints, care of the elderly and HCAI.

In 2008 we held a summit on infection control with the following call to action: for hospital trusts to end the culture ignoring infection control guidance; break the vicious cycle whereby increased bed occupancy leads to more infection, which in turn leads to higher bed occupancy; and for infection control to become part of all `
staff appraisals.

From the patient’s perspective, in 2007 the Patients Association MRSA focus group highlighted numerous factors adding to the problem. The participants identified that even though there were huge numbers of news stories on the issue, information about hospital infections was hard to come by. People did not know what they could do to reduce HCAI incidence. They also highlighted that staff often ignored patients’ complaints or did not take sufficient action. Treatment at home was shown to be weak, a problem whose effects are particularly bad as most patients wanted to go home at the earliest opportunity.

These factors are crucial in maintaining patient safety.

NDM-1
New research shows that another type of antibiotic resistance has emerged. Dr Andrew Pearson, Vice President of the Patients Association, and Dr David Livermore led a team of investigators in research on a new form of resistance. In August, the group published their findings, which showed the bacteria E. coli and Klebsiella pneumoniae displaying resistance to the powerful class of antibiotic, carbapenem. The resistance was conferred by the gene New Delhi metallo-beta-lactamase 1 – NDM-1.

The authors concluded: “the potential of NDM-1 to be a worldwide public health problem is great, and coordinated international surveillance is needed.” The gene gives the bacteria resistance to all front line antibiotics. Though transmission of bacteria with NDM-1 resistance is still relatively low, the threat is clear: the number of possible forms of acquiring an infection resistant to antibiotics has increased.

Money
The news of new infections should not take attention away from the existing threats. Recent years have seen the introduction of strict infection control targets for MRSA and C. difficile and infection rates have decreased significantly. However, in annual plans for 2010-11 submitted by the 129 NHS Foundation Trusts to the Foundation Trust regulator, Monitor, 15 declared themselves at risk of missing these targets in the next year. Monitor should use this information to keep track of the trusts, and enforce sanctions if they do indeed fail to meet the targets.

The same review saw Monitor rate 54 per cent of Foundation Trusts at moderate financial risk for 2010-11, compared to just 32 per cent in the beginning quarter of 2010. It is clear that financial constraints will hit hospitals. What is worrying is that many hospitals see a possible effect of this is a reduction in patient safety.

Policy
The government’s white paper introduced large change to the NHS. One of the most significant proposals was to reduce management costs by 45 per cent. The government hopes that another headline change – that of abolishing PCTs and placing healthcare commissioning in the hands of GPs – will help to achieve a significant part of this saving.

The other major driver of management savings is through the reduction of arms-length bodies (ALBs), associated with the NHS. In a report published in July, the government proposed to abolish between 8 and 10 of the 18 ALBs associated with the health service, with many of their functions consolidated to existing organisations. It is proposed that The Health Protection Agency (HPA) and the National Patient Safety Agency are to be abolished.

Judgment on the reforms clearly cannot be made until the changes come into force but at this stage we can say there is a risk that the activities of key bodies for HCAI, such as the Health Protection Agency (HPA) and the National Patient Safety Agency may not adequately be replicated. This risk needs to be guarded against with the utmost care to avoid the public suffering as a result.

Public Health Service
The white paper also proposes establishing a Public Health Service – under the control of local authorities. The functions of the HPA will transfer to this new service.

Again we cannot be sure of the effects of this until consultation on the service is finished and changes are in place. However, it may represent an opportunity for infection control – if research such as that on NDM-1 occurs within the remit of the same organisation responsible for public health messages, the hope is that the message will be clear, strong and up-to-date.

Action – putting patients first
So what can be done to maintain and improve infection control? And what do we mean by putting patients first?

We need to approach infection control from all sides – not as an isolated problem. This means addressing all of the threats highlighted above, with a constant regard for the effect on patients and the public.

To help create a joined up approach, The Patients Association recently hosted a series of roundtable meetings in three related areas: continence care, tissue viability nursing (TVN) and HCAI. The aim of this was to bring together experienced professionals working on the ground, policy makers, professional organisations and patients to get to the heart of improving care.

The first two meetings were clear examples of the benefits of addressing the wider factors that contribute to the issue of infection control. The ideas discussed and proposals put forward aim to address the root causes of infection which often lead to HCAI. With this background environment for infection reduced, fewer people will become positive for drug-resistant bacteria, and fewer cases of HCAI will result.

The meeting on HCAI was chaired by Dr Pearson and involved leading figures from the HPA, research groups, patient and professional groups and the Department of Health. At the meeting, Dr Pearson focused on three questions: What should be the measure for avoidable risk? How should this information factor in patient choice? What affect can this information have on patient involvement in healthcare? These factors centre on the information needed to address the issue and highlighted how the lack of information – particularly on infections other than MRSA and C. difficile – is hindering patient safety.

The meeting launched a working group on HCAI, to meet again in December. The group will use examples of good practice, and leading healthcare professionals’ experience, to create the advances we need across the NHS. Dr Pearson said: “We need to identify and stamp out unsatisfactory and dangerous practices to bring down infection rates across the NHS.”

Maximising results
The Patients Association always stresses that the patient must be at the centre of the health service, with as many avenues as possible used to improve patient care. For infection control this means seeing HCAI as a problem with many causes, all of which need to be acted upon. This is at the heart of our way of thinking.

To have maximum effect, this approach needs support from many sectors – the independent sector, in funding research and facilitating meetings such as ours; and the government, through organisation of the NHS. Commissioning of the health service must continue its efforts to become smarter. If more effective pressure ulcer care can reduce the burden of HCAIs, Primary Care Trusts (and soon, GP consortia) should factor this into commissioning formulae and as a result commission services appropriately.

Currently, the severe lack of information hampers commissioners’ attempts at providing the smart commissioning required. If the proposed information revolution includes patient-centred outcome measures, comprehensive clinical outcomes, staff ratios and incidence levels by ward or department, then commissioners can use this to create the right skill mix on each ward to provide the highest quality and safest care at all times. Progress to the goal of safe and high quality care must be the driving force in implementing changes to the health service.

Policies aimed at finding the £15-£20 billion savings in the NHS, such as closing down ALBs, should also support this process. It is no use if advances are being made on one front, only for ground to be lost on another. And opportunities for a unified approach with the Public Health Service should be seized – with research, public health education and patient information going hand in hand.

Most importantly, the approach of placing the patient first means that advances should take the whole country forwards together. This means redoubling efforts to reduce the variation in outcomes currently seen. With HCAI primarily picked up in hospitals, we must not allow the misfortune of being at the wrong hospital to dictate a patient’s health, care and even survival.

For more information
Tel: 020 84239111
E-mail: mailbox@patients-association.com
Web: www.patients-association.org.uk