Have your say: the changing patient

It’s unacceptable that a cancer patient’s experience still depends on where they live, their age and what type of cancer they have. We believe that the care and experience patients receive is just as important as their clinical treatment.

There must be strong incentives within the new NHS to ensure steps are taken to improve patient experience across the board.

There is at present no joined up thinking in terms of physical and mental health care. The current climate of social and community care increases the stress on service users, especially those with a mixture of comorbidities, many of whom also have developmental disorders. There is little acess to support in the statutory sector for even those with the most serious mental health issues. The commodification of care in the community has drastically reduced services whilst claiming this to be in the clients interest, expecting them to 'take part in their local community' actually leaves them alone and isolated.

How about more compassion? Making patients feel that they matter and are not on a conveyor belt. Having a nurse allocated to a group of patients so that they can get to know her and develop trust. This happens in paediatric wards - why not on others? Abolish same sex wards (except for CCU, ICU). Have porters allocated to patients as well so that people are not dumped in corridors without knowing where they are going next (and when). Ensure that the health professionals are valued and looked after - they are much more likely to look after their patients with kindness and attentiveness. In fact, value and look after everyone including the porters and cleaners. We really need emotionally intelligent leadership at all levels.

With the forthcoming changes to Healthcare Support Worker and Nursing Assistant in terms of registration and accountability. Will the role of the HCSW and NA's in care giving be reduced, due to the fear of the blame culture or will they be supported to provide more and often simple interventions in terms of both physical and psychological care? If this change could be implemented care in mental health in particular could move away from the culture of medication as the primary 'cure' or prevention technique.

That the placing of ambulance transport in the hands of non-medical `management` has led to disrupted outpatient appointments & life-threatening events; it should be back in the hands of dcotors & specialists. Also, the repair & maintenance of disabled persons stair lifts has been refused by local Social Services, expecting the users to pay for expensive repairs. Both these things are unethical, illegal, & against N.H.S. & the Disabled constitutions.

A comment on the population trends. There is always talk about the ageing of the population and the need to care for a burgeoning number of octogenarians. What is always missing from the debate is the change in the number of middle aged people.

Have a look at the population pyramid in the Age Structure section. It shows how the relative size of different age groups will change over the next 20 years. There is currently a peak in the 40-49 groups, those born in the 1960s In 20 years they will form a peak in the 60-69 groups. If you look at the graph of cancer incidence by age (cancer is my special interest) you can appreciate that this will result in a sharp increase in the numbner of cancers the NHS has to deal with in people who are young enough to be expected to be fit enough to be treated for their disease. This fact illustrates a phenomenon that has been active for some time - the step in the current population distribution between 65-69 and 70-74 represents the beginning of the baby boom - the number of cases of cancer in this country is increasing sharply for purely demographic reasons.

Now the UK has a poor record for cancer which boils down to an inadequate approach to diagnosis; this is partly due to inadequate capacity in diagnostic services; this needs urgently to be corrected to meet current unmet needs let alone projected needs. And more, more timely, diagnoses means more demand on treatment services.

These issues are rarely discussed. I was at the recent National Cancer Research Institute meeting in Liverpool last week where I heard only one oblique rference to the problem.

There is an inescapable need to find more resources for care of patietns with cancer.

Two key things need to happen to promote earlier diagnosis of cancer. First the patient needs to present earlier and second the (mainly) GP needs to think of cancer as a possible diagnosis.
To enable the first we have just made available free for patients our powerful symptom checker at symptomchecker.isabelhealthcare.com

For the 2nd there should be a requirement in the medical notes for a differential diagnosis. Almost all the research on delays in diagnosis show that the clinician should have done one. It seems mad that one of the fundamental pillars of good medicine which has been taught for over a 100 years is not required to be carried out in practice. It's also much cheaper than ordering a lot of tests in the hope of the diagnosis being revealed!

Hospital staff and hospitals themselves seem to create anxiety-not helpful when supposedly promoting patient wellness whatever the age of the patient!There is also a marked attitudanal difference -in my experience -
on the part of consultants between the way in which one is treated under private care and NHS care.They are less inclined to be patronizing, and again - in my experience actually turn up every morning to monitor their patients progress.

In the next 20 years I'd like to see a debate on:
1) medicalisation- with more care provided by a range of professionals, such as acupuncturists

2) holistic and personal care... Rather than a focus on "pathways" for particular conditions

3) a new partnership between east and western medicine. We are seeing a huge growth in demand for acupuncture by the public that should be reflected in new research and development

I do welcome and congratulate the kings funds excellent approach in creating open dialogue in this area.

The patient experience should be driven by measurable qualitative factors. High levels of care within affordable limits are only likely to be achieved by greater integration of health and social care provision, joint commissioning (through Health and Wellbeing Boards perhaps) and, in the case of care of the vulnerable elderly and those approaching the end of their lives, a complete rethink about the structure of health services - especially breaking down the barrier between primary and secondary care.

Osteopathy treats the person, not the condition - making use of osteopaths who have a knowledge of the body akin to a surgeon, without the intention of making any incisions could save the NHS £££££s in unecessary MRI scans, possibly counterproductive painkillers etc and provide patients with sympathetic treatment and attention for a longer duration than any GP could ever provide.

Osteopathy is brilliant for keeping older people leading active productive lives for longer. We have treated Southwark's volunteer of the year for 2011 the past 10 years free of charge. Initially crippled by Reflex sympathetic dystrophy for which the GP prescribed anti-depressants, she says that osteopathy has helped her manage her condition and help improve the lives older pensioners.

Any analysis of health inequalities and trends must pay attention to gender and men's health as well as socio-economic factors. Premature mortality is largely a male issue in the UK and the rising rates of obesity in men are a health timebomb if ever there was one, not least because of the forthcoming impact on the incidence of Type 2 diabetes. We also need to respond to the excess burden of cancer in men (they are 70% more likely to die from a cancer that affects both sexes) and to find ways of improving men's use of many health services. It would be really helpful for the King's Fund to look at its data through a 'gender lens' too.

I just wanted to thank you for an excellent analysis and summary of some good data. It is really vital to address demographic issues in planning future services and I think you have done a great job of isolating the key questions and presenting the data in a meaningful way. Many thanks for stimulating a very important debate.

Life expectancy for low-income groups may stop increasing or reduce, as it did in USSR for a while. Many of the principal drivers for longevity for this group are now static or in reverse.
Therapy professions still seen to "train for tribalism" , to sit on records, guard their patch , keep their assessments to themselves.
The younger generation of patients wants on-line access to NHS to be much more informative and effective. there is a major gap between what is expected and what is offered.
Primary health care GPs could play a much more forward role in prevention and health promotion . They will do it for money.
Primary health care quality is patchy and often much worse in needy areas. We need a new determination to tackle this exacerbation of inequality.

In the future, patients will expect that the care they receive will have been informed by the outcomes of care delivered to every other patient like them who have been in the system before, and their experience will in turn influence the care of the next patient in line after them. The way Amazon does.

They will expect that health and social care professionals they interact with will "just know" relevant information about them without it having to be repeated, written down, or buffered in a queue. The way their internet browser does.

They will expect the people responsible for their GP practices, their hospital wards, even their local commissioning to be responsive publicly and transparently to feedback (good or bad). The way their supermarket does.

They will expect to be able to browse and easily compare equivalent services, and even have providers compete for their business. The way the insurance industry does.

Oh yes, in a mere 5-10 years, patients will one day be able to expect the kind of service they already received as consumers at the turn of the century...

One of the most significant challenges facing the NHS is that we do not know whether many of the interventions it makes actually work to improve the health and wellbeing of patients. This applies to the drugs prescribed in primary care through to the medical and surgical interventions in hospitals.

The evidence base is weak to non-existent for maybe the majority of all NHS activity.

Moreover, when there is uncertainty about the value or the relative value of a drug or intervention, the NHS does not have the habit of collecting that evidence even though it is well placed to do so. If for example, as Ben Goldacre has recently suggested, the NHS systematically tested the effectiveness of the drugs it prescribes by randomising the treatments given to patients (from the list of those used commonly) and then linked the treatments to health records and outcomes, the level of reliable evidence would rise rapidly. If we ensured that high quality outcomes data were always collected for the major interventions delivered in hospitals then the system would rapidly generate reliable knowledge about what really works and what does not.

The NHS does not currently have a habit of admitting to gaps in our knowledge or a habit of continually striving to measure results and improve them. But if it were to develop that habit, the state of our knowledge about what works and what does not, improvement would follow quickly.

We might even find that the NHS has the capacity to cope with the great demographic and financial challenges it faces if only it focussed its efforts on the treatments that actually work and stopped wasting resources on those that don't.

We need a complete reform of our approach in supporting people with LTC, moving from a medical model to a more holistic approach which looks at medical history and lifestyle, not just the here and now within your 10 mins with a GP.

Currently we have a system that allows too much emphasis on diagnoses and we label people with conditions that are incurable. My mum just had surgery for an underlying knee injury due to wear and tear which went untreated for 2.5 years due to a diagnosis of Parkinsons which has had a huge impact on her quality of life and mobility, where she has challenges in this area anyway as a result of the condition.

We need consistent training in health and social care on LTC. The knowledge and care skills for individuals with LTC are inconsistent and how to care holistically for patients does vary within general practices and health and social care organisations. There is certainly evidence of a different standard and quality of care and supportive services available, a postcode lottery and health inequalities within areas of affluence as well as areas of deprivation.

Other than links to national supportive charities there is no emotional support on diagnosis and involving families and loved ones. This impacts on the physical and mental health and wellbeing for all involved following diagnosis has a ripple effect and a lack of uncertainty for future.

We do not engage patients and families in decision making and often these groups are just wanting to get the best standard of care for their loved ones, as you would expect for your own family. There is certainly a negative view of these groups as interfering individuals and as a result of the emotional stress they go through that they are treated as groups who could not possible have a view on change at a professional level which is a huge oversight. I certainly feel personally that consultation with me and my family is avoided and there is a lack of communication about the future. As changes come, either with medication or through health status changes these are always a shock even when families are aware of the realities of degenerative conditions, this is never addressed.

Our benefits system is completely inaccessible, at a 55 page DLA process it makes it impossible for anyone with any sort of impairment to submit an application. We need drop in surgery sessions that supports individuals 1 on 1 to make these applications and to ensure they are getting every support available.

Good documentation from professionals. The frustrations that arise for individuals when tests are completed and results lost or not referred on are huge. My mum has to ensure that she writes everything down otherwise you can be sure that the information will be lost. This is unacceptable and we can not expect people who are unwell physically and cognitively to be doing the jobs of professionals. This is particularly true within medication management.

As more and more people survive life threatening illness, we will see LTC becoming the norm for the population, therefore we need to get this right!

The NHS is geared up to look after the multitudes but the minority illnesses/diseases still have much to be done. Many minority diseases are still boxed under the wrong care pathways for example Alpha 1 Antitrypsin Deficiency is classed as a COPD condition when in fact COPD is only 1 of the symptoms, reclassification should be looked at especially for more recently discovered inherited genetic metabolic diseases and should be re-classed accordingly into care pathways.

The current focus on the management of long term conditions appearts to be those people over the age of 75. Whilst there are undoubtedly challenges to the current health care arrangements for managing this group effectively, it is important to consider how long term conditions affect much younger people, especially those of working age. There is now good evidence that being in supported employment is good for health (and is a public health outcome) and it is essential that the workplace features in the long term planning of changes in how people are supported. Despite the excellent achievements of the health at work network of the Public Health Responsibility Deal initiative, there remains a blind spot amongst health care planners regarding the utility of the workplace and occupational health in promoting healthy behaviours, assisting with ongoing support of people with conditions and facilitating rehabilitation back to work after exacerbations. As the working population ages, with the expectation that people will have to work longer before being eligible for an occupational or state pension, it will be essential to include occupational health aspects in care pathways.

businessinsider.com/business-innovation-in-healthcare-2012-12

This is fascinating. The Cleveland system is innovating with many of the best parts of the NHS yet far more radicalism. These include ending the split between medicine and surgery and annual contracts for doctors. Could this be a lesson for transferring our system?