Joined-up care: Sam's story

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The jargon of 'integrated care' is much-used in health policy and management circles. But why does 'integrated care' matter? And what will it mean for patients? This short animation aims to bring integrated care to life for anyone involved in improving patient care. If those working towards integrated care can share this vision with others in their local health and care system, then there is a real chance they can make integrated care happen.

Comments

Harry Longman

Position
Chief Executive,
Organisation
Patient Access Ltd
Comment date
25 September 2013
As an idealised design for a model patient, it's plausible. What we need now is real designs for real patients and to know how they cope with actual demands.

Mike Clark

Comment date
25 September 2013
It would also be interesting to see some of the health & care costs associated with the different interventions in the animation.

brenda prentice

Position
Now retired,
Organisation
Volunteers for Somerset Community Care Matters
Comment date
26 September 2013
Wish there had been joined up care for my son who had his pancreas removed. It was beyond the understanding of those who should have been there for him. He had childhood pancreatitis for 23 years and five major health issues including type 3 diabetes.
There was no help and he died 4 years ago. But, no one has done anything wrong! It is useless to complaint to PHOS or LGO, they simply close ranks.

junehughes

Position
p/t student,
Organisation
open university
Comment date
26 September 2013
well it sounds very good as it much better for everyone with patient at centre ,but in reality this is not so ,as yet happening in uk or we in post code lottery .

Mark Rickenbach

Position
GP,
Organisation
Park Surgery
Comment date
26 September 2013
This happens in our area when the district nurse has time to co-ordinate care. The key is good communication, a named lead and sufficient time.
What is sad is to see things fragment because of insufficient time and lack of shared information http://www.docrick.co.uk/Medical_practice/Commissioning_Pathways_of_Care/

david oliver

Position
consultant physician/visiting fellow,
Organisation
royal berks/kings fund
Comment date
26 September 2013
Thanks for comments so far. First of all, Sam may be imaginary but I can tell you from 2 years as a doctor in the NHS and from members of my own family that the story of the problems he faces is all to real. If we had lifted the story from a real life patient it could have been identical. Second, we make it very clear in the voiceover that the kind of best case scenario can and does happen for some people in some places but needs to happen much more consistently across all localities and for all patients. We are very clear about this in the animation and various kings fund events. Third, with regard to costs and cost-savings, this is a very contentious area and a minefield. I suggest starting with the document "dealing with the downturn" 2009 by NHS Confed and the Nuffield Trust report on future health and social care funding and kings fund "health policy under the coalition government" and "transforming health and social care reports". I also strongly suggest looking at peer reviewed evidence from clinical trials, NICE guidelines, Cochrane reviews, robust peer reviewed case studies and not either marketing materials produced by providers with vested interests, nor from extravagant claims of cost-benefit by consultants being paid to deliver recommendations that people want to hear.

David Oliver

david oliver

Position
consultant physician/visiting fellow,
Organisation
rbh/kf
Comment date
26 September 2013
by the way - that was "25 years as a doctor" not 2!

david

will sullivan

Position
Team Lead Respiratory Rehabilitation,
Organisation
Lancashire Care NHS Foundation Trust
Comment date
29 September 2013
Comment: Sam's Story Joined up care, excellent and accessible explanation of integrated care and using the term joined up care will help to open up the debate to a wider audience. Unfortunately the example does, I feel, over simply (perhaps it has to in this only 3 minute film) the management of emphysema (COPD) / breathlessness via the use of short bust oxygen. It is somewhat misleading that supplementary oxygen is effective in treating chronic breathlessness. In addition it rubs up against best guidance on prescribing home oxygen. Maybe a quick mention of cost effective interventions such as rehab services / patient support groups would have been useful (work by NHS London Respiratory team – including in DOH COPD/ Asthma Outcomes Document). Unfortunately in my working life in respiratory care the prescription of short burst oxygen does not remove breathlessness and the psychological barriers it sometimes brings. In conclusion it brings the debate over integrated care to real life.

david oliver

Position
consultant physician/visiting fellow,
Organisation
royal berks/kings fund
Comment date
29 September 2013
Dear Will

Point taken. You clearly have a great deal of expertise and experience in this field and I respect that. We also had a twitter comment to the effect that although we had acknowledged Sam's bereavement and possible depression we hadn't explicitly mentioned mental health services. Ultimately we wrote the animation to illustrate what person-centred co-ordinated care is all about and why "integration" should be based around the person not structures or money. Even though we put a great deal of effort into getting the story right (and I am myself a consultant physician who deals daily with patients who have chronic lung disease and often refers to respiratory CNS for domiciliary oxygen) it is inevitable that people with specialist knowledge might find fault with elements of the story. But the point is the Big Picture around people with multiple co-morbidities using multiple services and in the first half of your post you do acknowledge that it does this well. Feel free to attend our conferences on 22 October on services for older people and on 25 October on care co-ordination

David Oliver

John Grumitt

Position
Non exec,
Organisation
International Diabetes Federation
Comment date
01 October 2013
I have just returned from Denmark where they truly believe in this stuff and far more importantly, they actually live and breathe it rather than just talk about it. As a result real benefits for patients are delivered and resources used more effectively. We desperately need to create an environment in this country where people are able and supported to deliver integrated care. Papers like these are useful, but we need leadership and confidence which appear to be in short supply right now.

naomi smith

Position
Director,
Organisation
NSProfessionals
Comment date
02 October 2013
I really like this film. Having worked as a nurse in the NHS for nearly 30 years and now running my own business specialising in safeguarding, I have spent a lot of time helping organisations, managers and practitioners to work in an integrated way. For me the key is to truly understand what integrated working means. I believe there is confusion over this and many will use integrated and multi agency in an interchangeable fashion, which they are not. Many of us find our own professional agendas become the centre of the working together rather than the patients/clients needs or outcomes. I believe until we take this on board, we will continue to find integrated working the exception rather than the norm.

Sally Spicer

Position
Practice nurse for the elderly,
Organisation
Dr Rutherford and ptnrs Gp surgery
Comment date
02 October 2013
I have been doing annual elderly health assessments for the last 24years and also visit clients on a regular basis when there is a problem. The idea of integrated care is great and it does work well but a lot more resources would have to be put in if district nurses were to take on this role. In our area the district nurses are struggling to cope already.

David Oliver

Position
consultant physician/visiting fellow,
Organisation
Royal Berks/Kings Fund
Comment date
04 October 2013
Most reaction to our animation positive. I think we should all bear in mind that this is "big picture" and illustrative. It was never intended to explore every aspect of service in detail, though the Kings Fund has produced numerous resources and conferences that do just this. The main thing was to make integration about "person centred co-ordinated care" rather than structures/mergers/process/money. Integrate around the person.

One person has said we ignored the importance of good mental health (we did not. It was clearly mentioned that Sam was bereaved, sad and socially isolated. Albeit we didn't explicitly mention specialist mental health services, most depression/anxiety/loneliness is dealt with in primary care)

Another has said we have represented a move to nursing and residential homes as something to be avoided at all costs. (We did not, we just tried to offer Sam alternatives to long term care so he could stay at home as he wanted to. Maybe he will need a care home in the future but not before he had been given the right supports to try at home)

Someone else has mentioned short burst oxygen therapy but we didn't specify whether it was long term or short burst, just that he was supplied with Oxygen

A couple of people have mentioned that perhaps the care co-ordinator shouldn't be a district nurse because the district nursing workforce has suffered reductions. Understood. but if we had said that the co-ordinator was a community matron, nurse practitioner, someone from the voluntary sector etc we would have had the odd critic there too.

The main thing is the "big picture" for joined up, person centred co-ordinated services for Sam and people like him. I am a consultant geriatrician and no-one mentioned us either, but I am not objecting. No slights intended to any profession or discipline but you can't mention everyone in 3 minutes

David Oliver

Debbie Davies

Position
Productive General Practice Programme Lead New Zealand,
Organisation
MidCentral District Health Board
Comment date
12 October 2013
Thank you for the animation. This is a concept we struggle with in New Zealand for a variety of reasons. However we are excited that there are key levers which, when enabled, will enhance integrated care. The acknowledgement of the range of determinants of health ( such as social care, housing and income) are key pieces to the 'Integrated puzzle' and those which we are attempting to address through the development of 'Integrated Family health centres'. This however must not create even bigger care structures that are not 'joined up'. thank you for your example of the key role of a ' care coordinator'. Through the implementation of Productive General practice in our region we are focusing the teams on considering not only the introspective view, but the wider view. By focussing on stratifying the population in terms of risk and need, it becomes apparent that it is necessary to have a key coordinator of what can be a complex range of health and social care initiatives. A single budget would be a key enabler to more integrated approaches to care.

Phillip Bennet…

Position
Gp,
Organisation
Aberfeldy Practice, Poplar
Comment date
16 October 2013
What happens when Kathy isn't around? Does this make Sam revert to his previous escape mechanisms? Is there any evidence on resource shift from secondary to primary care to manage this change and any evidence on workload in primary care or admission rate changes? Not trying to be cynical, just would love to know the experience from the pilots. It seems that they key is continuity and individualised continuity of care.

Cllr Jonathan Owen

Position
Deputy Leader, Chairman Health and Wellbeing Board,
Organisation
East Riding of Yorkshire Council
Comment date
22 October 2013
This mirrors issues with my own mother (87 years old and housebound). My grandfather (a chest consultant ) now long dead always said look for the simple solutions and dont over-complicate things.
Is it really beyond us to put a simple system in place along the lines of the animation - or do we tend to concentrate on the difficulties??
Cllr Jonathan Owen

Nicola Buckley

Position
Nursing Manager,
Organisation
Consultus Care and Nursing Ltd
Comment date
29 October 2013
I agree with Councillor Owen, the simple solution is best. It is also the most cost-effective. I wonder how many meetings the healthcare professionals featured in the video would have in order to provide Sam with adequate care? Consultus has over 50 years experience in providing live-in carers and nurses who not only meet an individual's daily care and nursing requirements, but also act as a liaison between all other healthcare professionals where necessary.

Roderick Francis

Position
Retied,
Organisation
Firth Moor Community Centre
Comment date
08 November 2013
I do agree with the comments and think that integrated care is theway forward for patients.

John

Position
NHS Manager,
Comment date
04 December 2013
Interesting video and I strongly agree that simple, integrated care is the way forward. I must say however that I found the comment that Sam and his carers would communictae and discuss his care via the internet to be suprising. I know quite a few silver surfers and don't mean to question the abilities of anyone, however I'm not convinced that all 87 years olds would be able to use the internet reliably to coordinate even smaller aspects of their care.

Maggie Keeble

Position
GP & Clinical Lead Frail Elderly,
Organisation
South Worcestershire CCG
Comment date
01 March 2014
Where is Sam's family in your model?Most older adults have at least one interested and able family member/friend who knows more about them than ALL the health care professionals. We should harness the knowledge of these 'Health Care Representatives' acknowledge their valve and have them at the core of planning any care. They are a free motivated enthusiastic and untapped resource. Where else can we say that in the Health/Social Care Service?

Mo smith

Position
Chair of trustees,
Organisation
Regenerate-RISE
Comment date
20 March 2014
Working within the voluntary sector in south-west London, we work hard at integrating care for our clients to enable older people to remain in their own homes. With clients who are on the Community Ward we provide the 'out of hours' care, the practical care, the befriending care and the advocacy some so desperately need. We attend a&e when clients are admitted and visit in hospital ensuring that their care plan is in place before discharge. We accompany clients to hospital and gp appointments and can often answer the questions that patients cannot answer. We advocate for those with dementia and for those with no family. However, within the NHS sadly our knowledge and expertise doesn't always count for much and our opinions not always listened to. Funded and supported by Adult Social Care, I see a very big gap between health which is free at the point of delivery and social care which is paid for. We also give a free service at the point of delivery, well respected in the field if social care but not expert enough within the health field. Until the doctors and health professionals recognise that our role is as valid and as important as theirs - integrated care cannot take place. My dream is to see integrated care and we are working towards it. It would make the world of difference to older people, would enable them to remain in the community and our older people would lead happy and fulfilled lives

Mr Anderson

Position
Engagement & Support Officer,
Organisation
Care Opinion
Comment date
27 March 2014
This is a wonderful little piece of work and I am going to use it widely in trying to explain the difference between health and social care.

It makes me a wee bit uncomfortable in terms of he health side of things as I feel very strongly that the social model thinking should very much be at the fore of integrated care. It a bit hard given the medical interventions people with long term conditions have in relation to their health. So I am just being picky I think.

Anyway, it's great and I am about to pop a link to it up on the Patient Opinion and Care Opinion blog pieces on integrated care.

Speaking of which, I give some of my own musings as a service user on what is happening in my own City Sheffield on the Care Opinion blog. There are some good things helping me in terms of integrating the services I use. Better still, I understand that Sheffield are to look at integrated care and pooled budgets as the future means of combating the lack of centralised Government funding and a need to diversify and create solutions. Most local people are enthusiastic about the pooling of budgets and the move, that is being led by the City's Health and Well Being Board, is one of the few positive happenings that has come from Government reorganisation of health services, commissioning and responsibilities for public health.

Please do take a look at what we are doing at Patient Opinion and Care Opinion and encourage the people you represent to contribute on the link below or take part yourself. You can also follow us on Twitter @careopinion

https://www.careopinion.org.uk/blogposts/254/integrating-the-health-and-social-care-conver

Jill Gould

Position
District Nurse Lecturer,
Organisation
DMU
Comment date
02 April 2014
This is a great model and as suggested- already in place to a certain extent... Huge constraints due to the damaging lack of trained District Nurses.. a drop of more than 40% in the past 10 years. GPs require additional training but apparently it's OK to send any nurse into a person's home to expertly identify complex need and co-ordinate client-centered care. The NHS is one of the most cost-efficient health services globally- largely due to the well-developed community services such as District Nursing. Working in isolation or with Social Services, District Nurses prevent hospital admission and delay moves into residential or nursing care on a daily basis. However, with very little control over client need or the resources to address social care needs, they are truly struggling under the weight of burgeoning demand and expectations, while trying to provde excellent client-centred care. This model is without a doubt the most beneficial both financially and for quality of life, but requires long-term investment instead of the short-sighted decisions currently predominating.

Jane McDowall

Comment date
14 April 2014
Speaking as The Daughter (this is how I'm constantly referred to by the professionals who look after my very old parents), the model outlined in the film is excellent. I only wish the reality was anywhere close to it.

Trying to co-ordinate my parents' care takes several hours of my time every week, it is in effect a second job. It's proved incredibly difficult to find out what's available and even harder to get it.

The district nurses I've dealt with have been amazing but their caseload is ridiculous and they can only dream of being able to provide the service Sam receives.

Anne Taylor

Position
District Nurse,
Organisation
Oxford Health
Comment date
14 May 2014
Sam's story is an excellent illustration of the difference a well-resourced District Nursing service can, and in some places & instances,does make. However with the dramatically falling number of specialist practitioners already alluded to ( see Queen's Nursing Institue report published this week) and the increasing demands on District Nursing services, it becomes ever harder for DNs to work in this way.
Mobile access to integrated records is also an urgent requirement to support integrated care. Whilst I absolutely support DNs fulfilling this role, I think it is vital that the 'key worker' role should be fulfilled by the most appropriate clinician for the individual, in partnership with any family members able & willing to be involved.

Susan McCann

Position
Carer,
Organisation
Parent
Comment date
10 September 2014
I dream of "integrated care".... in my lifetime please! As the parent of a young man on the autistic spectrum with moderate learning difficulties and a cluster of complex medical conditions, this elusive principle remains a dream. My son has a direct payment now and we have sorted his social care (for the timebeing) with social care funding, but I remain the responsible person for all his health needs because he doesn't meet the continuing care criteria despite the fact that he cannot manage his own health without support. Integrated care is an idealogy that needs an injection of creative thinking to ensure that people like my son can be cared for holistically in the community and not be batted about between health and social care. His autism is pervasive across his competencies and is little understood. People believe him to be more capable than he is but have no idea of the amount of discreet support he gets from his mother on a daily basis. We need a hybrid team of workers that do not need to be clinical professionals but who do need to have awareness training, understanding of medical conditions and above all know when to seek help. The clinical professional is a very expensive commodity. If I can be trained (no medical background for me) to deal with my son's health and gain knowledge about his conditions so can other committed, dedicated individuals who are not medically trained. Until we move away from this dogged view that everyone dealing with medical matters needs to have a medical degree, we will still be talking about this for the next 20 years... so in my lifetime, pleeeeaaasssee!!!

nosapience

Position
Resourcerer,
Organisation
NHS
Comment date
24 October 2014
Come on KF, you're making out like this is a new idea. The Hospital episodic jibe at the beginning has only really been the case since the early 80s shortly after industrial management was invented and piled into the hospitals. Politicians did that not managers, the managers can be useful.

Before that the community (especially district nursing and social work) did all the things you talk about and most of the staff still do, but in a system ruled by mechanistic old industrial ideas of control centred on Leaderism based in a hospital or a Council Chamber.

Give it back to the practitioners, they know what to do.

Janelle Cradduck

Position
STEPS carer ( means Short Term Emablement Plan Serivce ),
Organisation
Cormac Cornwall Council
Comment date
21 November 2017

I have worked as a carer for about 30 years and have since the different care that has changed in the years but it has still not got the correct system going in the community to keep people out of care homes and hospitals we as STEPS are support to give that 6 weeks period to help stop the bed blocking in the hospital and give people a change to stay home but as the government have still not worked this out it is getting harder and a strange on communities staff and services users we as a service would like to have the funding to provide a safe warm good and caring support for people please help us thank you Janelle Cradduck STEPS carer

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