Meeting the needs of people with long-term conditions: challenging our assumptions

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Part of Time to Think Differently

What is the scale of change required to meet the needs of the growing number of people living with long-term conditions?

That is one of the questions posed by Time to Think Differently, which, refreshingly, dwells less on how many of those people there might be and more on how their health and needs might be different and more complex than we have been used to. Technically we certainly can do more, but we have all changed our expectations, failure has been made more public, and the current building blocks of our systems of care are creaking.

So, time to think differently? Let’s start by challenging some assumptions in the new orthodoxy!
 
Assumption one: primary care can be sufficiently flexible both to take on the community-based care of greater numbers of frail older people and to undertake minor surgery on a sufficiently industrial scale to actually make a difference. Moving care into the community does not equate to moving the skill set into primary care. Few GPs have developed a special interest in older people, and the pioneers of GP-run intermediate care have retired.

Assumption two: ambulatory care-sensitive conditions in older people with multi-morbidity are best (ie, more safely and efficiently) managed outside acute hospitals. But what are the appropriate skills, numbers and availability of staff to make this true? At what scale does this begin to look like bespoke mini-acute wards without the plurality of responsiveness that hospitals can offer? What are the opportunity costs in the context of human resource capacity?
 
Assumption three: significant numbers of new clinical service providers enable innovation to emerge without disrupting better integration of provision. Most new providers focus on well-defined and predictable clinical interventions, such as a discrete episode of surgery in otherwise well people. But for frail older people with a number of health issues, separating out treatment for different conditions in a piecemeal way is counter-productive to overall efficiency. 

Assumption four: pro-active preventive services are better than the traditional responsive NHS services. But there is evidence, eg, from falls prevention clinical trials in UK, that community-based approaches initiated in primary care are significantly less effective than integrated and reasonably expert responses to emergencies – eg, initiated by A&E staff or ambulance services. Why? Maybe those who present themselves as emergencies are subtly different from those who don’t, in a way that increases potential for benefit. Or maybe they are more risk averse, which encourages them to take up and adhere to interventions? We know that acute–community integration can be done, because the Kaiser Permanente health group did it in the United States – but how? Did they do so by preventing acute relapses through secondary prevention or by responding to them more quickly, better, differently?

Assumption five: NICE guidance will help the management of people with multiple long-term conditions. Well, it might, given time. But how helpful can this approach be for the typical patient who presents to acute or intermediate care, eg, an 82-year-old woman, living alone, with hypertension, mild dementia, non-insulin-dependent diabetes, two falls in the past year, uncomfortable ankle swelling? We can start by borrowing evidence from research populations – generally not like our patient – about the relative risk reduction associated with condition-specific treatments. Then we extrapolate those reductions over the estimated life expectancy (large margin of error here). We then turn to the burdens of the treatments (monitoring, hassle, side effects, etc). And so to the magic moment: establishing the patient’s preference in the light of all this uncertainty. Simple? No wonder a wise GP is offloading this to the nurse or pharmacist!

So I think we need to think through the nature of this complex work, and clarify the respective roles of specialists and generalists. Both need to work differently to a common purpose, sharing responsibilities for outcomes. The prospect of developing this while negotiating with a plethora of small-scale providers and new entrants to the market is a little daunting. Back to Kaiser Permanente: how much integration can you achieve without limiting autonomy and imposing collective responsibility for clinical governance on all providers?

Finbarr is a Consultant Geriatrician at Guy's and St Thomas' NHS Foundation Trust and Professor of Medical Gerontology at King's College London. He is also former President of the British Geriatrics Society. 

Comments

Dr MAlcolm RIgler

Position
GP in the NHS,
Organisation
Riverbank M C WOrle, SOmerset
Comment date
29 November 2012
All this is true and complexity can verge on chaos which we must avoid . Another dimension to add to the new thinking about "long term conditions" is the interesting concept that appears in the SOuth West of England Strategic Health Authority's document which is that of "the health campus" in which patients with LTC learn from each other often through a virtual portal developed by a "Libraries and Health" partnership . One charity - MAGGIES CANCER CARE CENTRES - is already offering "nurse led guided websurfing" so extending the 7-10 minute GP consultation and allowing patients and carers to learn relevant things at their own pace and in a convivial setting. Kaiser Permanente puts great emphasis on the need to support the learning needs of patients and carers - our "Libraries and Health" developments could prove to be an important step towards the avoidance of too much complexity and the chaos that would follow.

Mitzi Blennerhassett

Position
patient activist, medical writer, author,
Organisation
voluntary: trustee Rarer Cancers Forum, NCATConnected, Specialised Commissioning Radiotherapy, Yorks Cancer Network User Partnership Group, National Screening Information Panel
Comment date
29 November 2012
Having long term conditions may involve self management. For me this has become a joke- NHS DIY. I am unable to self manage lymphoedema effectively, as I have cancer-related fatigue and un-addressed pain. The weight from extra fluid in abdomen puts more strain on my back, causing more pain. I cannot take effective pain killers because I must avoid constipation. No commissioned service for midline lymphoedema (body) yet it was caused by NHS cancer treatment. I travel a round trip of 90 miles for occasional MLD treatment when it could be available 15 miles away. I am 73, have had two cancers (anal canal and breast)and aggressive treatments. I have cervical spondylosis, spinal osteoarthritis, osteoporosis, bronchiectasis (thanks to not getting timely antibiotics and late diagnosis), midline lymphoedema and Dupuytrens both hands. Here is article just submitted to Lymphoedema News:
Lymphoedema commissioning: a backward step?

I sit on a radiotherapy specialised commissioning group and am anxious that midline lymphoedema does not seem to have been included in any planned specialised commissioning services. It is only in recent years that the extent of people affected by lymphoedema has gained recognition through the work of lymphoedema societies, therapists and clinicians, and official guidelines say treatment for midline lymphoedema should be a priority.

I have personal experience of midline lymphoedema caused by aggressive simultaneous combination radiotherapy and chemotherapy and then brachytherapy. I read that if ignored, lymphoedema is likely to lead to lymphorrhoea, elephantiasis, cellulitis etc. with frequent hospitalisation. My clothes no longer fitted me and I became increasingly depressed. The nearest lymphoedema clinic was funded to treat arms only. At another hospice-based lymphoedema clinic, it was a palliative care doctor who actually decided that I should not be treated. (I learned later the Primary Care Team provided a pot of money to the hospice but none was ring-fenced for lymphoedema treatments.) I felt abandoned.

I had to fight for a year for a diagnosis and treatment. After I went through a formal complaint process, the Primary Care Trust eventually organised a 'one-off' course of treatment at the nearest hospital, but although this was successful (2L fluid lost) I still could not routinely access further treatment due to funding decisions. I was finally treated at Wharfedale hospital, Otley, but midline lymphoedema services in particular are in short supply and my Manual Lymphatic Drainage (MLD) sessions have now have been drastically cut (in readiness for GP commissioning?) to two a year. I have a 90 mile round trip to the hospital and prolonged sitting is contra-indicated, so any benefit is likely to be compromised.

I feel abandoned once again and feel depression taking hold. Will lack of commissioned specialised midline lymphoedema services mean I will once again have to apply for each individual course of MLD? I am 73 years old, I’ve had two different cancers and suffer daily pain, increasingly severe fatigue and other long term effects of treatments. Self management of various co-morbidities already impinges greatly on my quality of life. Am I to endure further unnecessary stress and the prospect of battling for what should be straight forward access to treatment – and for a condition caused by the NHS?

debbie abrams

Position
general manager,
Organisation
nottinghamshire healthcare nhs trust
Comment date
29 November 2012
stepped care pathways developed for long term conditions that are seen as examples of good practice should include specialised neuropsychological assessment of cognition, emotion and behaviour related to the neurological condition. They should include specialist treatment to address the complex trauma and chronicity of problems that compromises coping skills. We need to consider an dprovide for specialised mental capacity assessments, and co-morbidity with other conditions including mental health co-morbidity. Such an integrated response would effectively address both moderate and severe levels of distress that can be experienced but may require longer term working that current commissioning models embrace.

Dr Malcolm RIgler

Position
GP , WOrle , NOrth SOmerset,
Organisation
NHS
Comment date
30 November 2012
To equate a "Libraries and Health" partnership development with "self care" is to completely misunderstand what the partnership development is all about. Yes already there is the "Books on Prescription" project led by our most Senior CLinical Psychologists in the UK and there are "story time sessions" for young children to help to promote a love of reading and learning so important for education and health . Many other themes are being developed and/or imagined such a "prescriptions for information" given by NHS COnsultants and GPs so that patients and carers can "learn at their own pace" but just as important if not central to the partnership working is the idea that "Patients Stories" will find a home within the Library and Health Service including and especially patients stories and the stories of carers where people have found NHS and SOcial Services have either proved to be very helpful and supportive or where services have been offered in an insensitive uncaring manner or have not been present at all . Until now so many people have had to fight and struggle alone when they are already sick and ill to obtain a diagnosis of their condition or the help and support needed. The "Libraries and Health" iniative is being developed - with the support of The Patients Association - to provide a home for "Patients Stories" so that people can learn from each other and so that action can be taken - such as by putting pressure on commissioning groups - to ensure that health and social care needs can be identified and met . To struggle alone in our highly complex health and social care economy is not just hard work but virtually impossible . To join with others in such struggles brings mutual support and greater hope of success.

Dr Michael Crawford

Comment date
30 November 2012
This blog marks a major reversal in thinking. The assumptions that Professor Martin says are manifestations of the new orhtodoxy have for the past few years been regarded as the views of those that are thinking differently. I'm with Prof Martin on this. I would also add another one.

Assumption six: any aspect of care that cannot be provided by a community service or a day-care centre must be centralised into a specialist institution. This policy which may work well for some well-defined groups of patients such as those with typical presentations of stroke introduces inequalities once the diagnosis starts to be come difficult or when co-morbidities make the patient uncompetitive when it comes to gaining access even for assessment of suitability for treament.

This is going to become a bigger problem for cancer patients who have passed the point of being fast-tracked for their initial treatment and who are in the position of being likely to benefit from NICE-approved second line therapy. They need a local cancer service with sufficient capacity to accommodate them. How will this be equitably assured?

Furthermore, cramming more and more specialist services into bloated centres is demonstrably an inefficieant way of providing healthcare. On the other hand, provision of specialist services in an institution as big as a "modest" acute general hospital is an aspiration for service provision in North America or Western Europe.

I am really pleased to have someone with the perspective of Prof martin given the opportunity to express his views.

judith brown

Position
Chair,
Organisation
Bristol Older People's Forum
Comment date
03 December 2012
As one of the client group, I am fortunate enough to be on-line and able to access information as Dr Rigler says: the majority of our 3000 members however are not.Our member survey in January 2011 had over 900 respondents, of whom 68% were not on line overall, with the figures rising steeply with age over 70. Of course, we are possibly the last generation to be in this situation, and as we die off the problem will solve itself, but in the meantime, if we extrapolate the numbers and I think we can, huge numbers of pensioners are digitally excluded from Government consultations about them and their needs, from information which could be of practical use to them and, not virtually ignored, but ignored in reality! Judith Brown Chair Bristol Older people's Forum

Emma Fernandez

Position
Project Manager,
Organisation
Royal College of Physicians
Comment date
03 December 2012
Whilst we are discussing the complexity and difficulty of arranging care for patients with multiple long term conditions I feel we are missing some important points. Any discussion of what changes are required to better managed LTC's should revolve around how to improve the patient's day to day living experience with that condition. I was very struck by what Mitzi had to say and the feelings of frustration about delays in diagnosis and lack of understanding of the impact of long term illness on day to day living. Whilst supportive self management and reorganisation are important there are aspects of living with a LTC, which are not being addressed at all. Things such as continuity of care,rapid access to someone they trust to understand them and who knows them, dealing with fatigue and pain, the cost of illness and attending hospital, the effect of illness on education, work and relationships. These are things we are not asking patients and not effectively providing. I think one of the biggest help we could provide patients with LTC's is to tackle the exorbitant cost of parking at hospitals, this is a national scandal that is currently being ignored.

Fliss

Position
Freelance Editor,
Comment date
05 December 2012
Moving towards clarification seems a positive step. I'm not the typical patient that Prof. Martin mentions under assumption five, but I do have a chronic condition requiring immunosuppressant medication. Accordingly, my health is precarious: I've suffered other serious illness and the possibility of relapse worries immensely, not only for the prospect of further physical pain but also due to the chaotic manner of treatment experienced to date. I note a tendency to shirk responsibility where it isn’t assigned clearly and I agree that there’s a need to define roles and duties, as precisely as possible.

Finbarr Martin

Position
Geriatrician,
Organisation
Guys and St Thomas' NHS Trust
Comment date
06 December 2012
Bigger (and fewer) specialist centres seem able to offer better clinical outcomes (eg cancer centres) and maybe also better patient experience with specialist nurses as contact points, guides andadvocates throughout the illness. For acute general services such as adult medicine, access to specialist interventions such as angioplasty for heart attacks and medical staffing issues such as reduced hours, plus the aspiration for an enhanced consultant presence at least 12-14 hours 7 days a week all mitigate against numerous smaller centres. Re-inventing community "hospitals" is one response to recreate a human scale and localism in care, but past experience offers little relevant guidance on what they would do and how they should run. By today's standards, they were unsafe and inefficient. For some who would struggle at home even with support, a local facility could offer multidisciplinary post acute reablement/rehabilitation. For others, the hub and spoke approach such in renal dialysis could be developed to take on patient education and support and issues such as managment of cancer related symptoms and Mitzi's lymphoedema. Either way, this type of "care in the community" is not primary care, it needs a new model. Most specialist services which are currently "hospital bound" will need to show some leadership in building these local collaborations. But if any of this is to resemble intergration rather than co-ordination, then quality of care and clinical outcomes will need to be shared accountabilities and incentives aligned. The former is more achievable in the short term.

Sir John Oldham

Position
National Clinical Lead quality and productivity,
Organisation
Dept of Health England
Comment date
07 December 2012
Prof Martin's views overall are not a new departure but rather a return to old thinking - and misses a major assumption; people don't like being treated in hospitals and having their care fragmented, and often those in- patient episodes worsen the overall functionality of a patient (let alone the risk of HAI) .
His assumption that primary care on its own could not cope is correct. But that is a false assumption. It is only by primary, community, mental health, social care working together and drawing on the expertise of geriatricians, that the real difference and betterment comes. The best results I have seen in integrated care teams is where community geriatricians are involved. Better clinical outcomes, better relationships between multiple providers and better use of resources with reduced duplication. One care plan not 5. In one case there has been a 17% reduction in mortality for older people withh multiple conditions.Outside hospital, in the community
Assumption 2 that people are best dealt with in hospitals is a view I hear often , mainly from London teaching hospitals, and there may be something about the experiene and culture that lends to that view. It is however incorrect , and secondly unaffordable by the nation. Whilst finance should nevcer be the driver; when we know we can offer better care more cost effectively then this hasto be taken into account.
Assumption 3 about new providers; this is not an assumption I have heard voiced in any of the very many conversations I have had in all parts of the country.
Assumption 4; I agree that there is little evidence on how we change individual behaviours to reduce the risk of getting a long term condition, but there is evidence that a pro-active stance on people with existing LTCs improves outcomes.
Assumption 5 I agree NICE guidelines have not taken into account co-morbidities , and indeed conflict for patients who have co-morbidities. I am pleased to say that due to the requirement from the National Quality Board NICEwill be addressing co-morbidities in future guidelines and work is in early stages I understand to develope guidance on how to deal with co-morbidities.
Finally we cannot meet the tsunami of need coming our way by more of the same. Neither is it either community, or hospital, but a different pooling of expertise that is truly focussed around the whole patient, their need which includes the service going to them, not the other way around. The digital revolution will come to healthcare and facilitate transformation of care delivery for the next generation with LTCs (who will be the facebook generation) . Meanwhile working together, shifting from a biomedical model to a socio-medical model of care is how we will succeeed. There are many places in the country this is already happening - I have seen it. And I haven't mentioned Scotland.

Cheryl Berry

Position
Project Manager,
Organisation
Expert Patients CIC
Comment date
21 December 2012
Innovation in Self-Management Course Evaluation

EPPCIC have been working hard at finding new and innovative ways to promote self-management. Our Health Education Impact Questionnaire (HeiQ) a tool, which measures the health behaviour outcomes in eight domains, is showing that one third of participants receive substantial benefits from attending self-management interventions (EPP and Choosing Self-Management for Life courses).

Each domain covers: Health-directed activity, Positive and active engagement in life, Emotional distress, Self-monitoring and insight, Constructive attitudes and approaches, Skill and technique acquisition, Social integration and support and Health service navigation.
It is interesting that the largest proportion of people reporting substantial benefits in the area of health-directed activity and skill and technique acquisition. This suggests that a positive impact is happening to enable people to self-manage better than before they attended the course. (cited: Sandra Nolte Ph.D, Outcomes from the choosing Self-Management for Life course, to be published). This area is fundamental to the individual taking more responsibility for their wellbeing and achieving the best health outcomes within the constraints of their Long Term Conditions (LTCs). There is a related benefit that reduces the use of health resources by these individuals over time.

All attendees of EPPCIC self-management courses are now able to join the on-line Expert Patient Community - expertpatients.co.uk/community EPPCIC welcome the opportunity to work with others to develop our programmes to target a wider audience.

We know we can make the difference that the NHS are seeking, email us at getinfo@eppcic.co.uk

Emily Harries

Position
Retired SRN,
Comment date
22 December 2012
As an 82 year old woman I have read, and heard, much 'gobly-gook' over the years, but none as long winded and incomprehensible as some of the entries on this site. Most of the letters would not make sense to anyone seeking information or help. I hardly understood Cherly Bery's comments - far too 'high powered' for this old lady. Perhaps she should be reminded that patients are people - sick people - and, if they are old or have multiple medical disorders and are in much pain , they are unlikely to be capable of, quote from her comment ' take responsiblity for their wellbeing'. Patients with long term illnesses need compassion and understanding along with proper medical care - esspecially those who are sufferibg with multiple disorders that are difficullt to treat effectively.

I could write much much more on this subject but I am too tired. However it should be understood that whatever 'experts' write about the care of the elderly sick they must NEVER forget that the patient's major need is UNDERSTANDING -from all the medical profession- that they are ILL and in PAIN. Only once, in over many many years, has a dotor ever mentioned my pain in a personal way ie. is it very bad - how are you coping with it - .They have seen the gross enlargement of my legs - the tightness of the skin over flesh- the enormous size of my very painful knees etc., etc., and yet, not once have I received a word of UNDERSTANDING of what I am going through. And, because I know that I am not alone in this I am asking you all to LOOK at your patient - SEE the pain they must be in and use your skills to empathise with them. Please do not expect them to 'help themselves' - What on earth makes you think that they do not that ?

Bharti

Position
Occupational Therapist,
Organisation
Barnet -CLCH NHS Trust
Comment date
24 December 2012
working with people with Parkinson's as part of MDT in the community setting, i find that too narrow a focus on patients' motor problems is not sufficient they definately want their emotional and behavioral needs adressed as well.

Steve Mink

Comment date
07 January 2013
Thank you Professor Martin
This is the best piece on this subject I have read in a long time.

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