I have been wanting to write this for ages, but have held-back because of the size of the issue.
You see, in Doncaster, we have been looking very closely at what is called ‘Intermediate Care’ over the past couple of years.
I will shortly explain what Intermediate Care (let’s call it IC) is – I have two main reasons for writing this– the first is because if reflects how our 21st Century NHS manages older people – particularly those who are frail and vulnerable, and, secondly, because most of the doctors, nurses, therapists I meet at work don’t understand what it is or how it works.
Frequently you will see something like this in the medical notes:
‘Waiting PSU’ – without anyone really know what PSU is (I’ll explain later), or knowing how long the waiting will be; patients consequently can be suspended in a state of not moving, not knowing why or where they are going or when.
I want to try to unravel some of this mystery here as it might help.
First, for some definition and explanations.
Intermediate Care (yes, IC), is any care (that is treatment, support or looking-after) that goes-on between a person’s home and the hospital; this therefore means the definition is broad, complicated, different in every area of the country, seen as a major way to improve care and save the NHS and, constantly changing.
This perhaps explains to some extent why many people don’t understand it.
The theory behind all of this is that most people want to live at home; they don’t like being away from their homes, they particularly don’t like being in hospital. This applies to most although not all. Following-on from this is the belief that not only are people happier in their own homes, they are healthier and more likely to remain independent – both of which reflect the tenets of the International Bill of Human Rights – a right to happiness, health and independence.
No one can argue with this reasoning.
It is perhaps a little unclear as to whether everyone is happier and healthier at home – the West’s solution to this has been the creation of nursing and residential homes; places where older people can be warehoused before they die.
There is much debate as to whether residential and nursing homes (let’s call them, RH & NH’s) are good or bad; most people know the model is unsustainable at it operates today because of issues such as quality of care, cost, staffing and the experience of many people living in residential and nursing homes being a model that is unlikely to survive the demographic changes of the next thirty years (when the Baby Boomers start to get very old).
This is not to say that many people currently living in RH and NH’s (usually more the former) are well cared-for, loved and supported and happy in their situation.
When my mum, for the last months of her life moved to a care home in Glasgow, although the initial ‘going into a home’ was traumatic, the experience was that mum loved the company.
I may be getting off the point.
Back to IC.
If we take as a given that people are happiest and healthiest in their own homes, as well as costing the health and social care system less money (there is some social economics here that says it is cheaper to be at home, that is, up until a certain point, when care is less expensive) – I am not going to delve into that area today.
A principle behind the existence of IC is that entry into healthcare is easy.
There are fewer aspects of modern living that are easier to do.
Much of this is predicated on the ability of our emergency services to respond in such an efficient and effective way to take people to hospital.
Chest pain, weakness down one side, high temperature and confusion – all will guarantee you a visit to hospital, potentially with blue-lights en-route.
Things often break-down when you arrive in hospital as the system is so complicated and under such unimaginable pressure (thanks for that Ms May et al).
Because of this efficiency meeting inefficiency, older people frequently become trapped in the system.
Managing well at home until they fall, the hospital system, modern chemical analyses and radiology can detect abnormalities that necessitate hospital admission; once an older person is in a hospital bed, that is when things start to go very wrong.
Brian Dolan, a Professor in New Zealand began the now global campaign to #endPJParalysis – this is the belief that the longer a person, particularly someone who is older, remains in pyjamas, in bed, the more they are likely to lose independence and functional ability (that is, do things for themselves)
In Doncaster, we have signed-up. I wrote something along similar lines last year.
What to do when an older person is in hospital and who doesn’t really need to be there?
When all the sophisticated machinery and technology of modern medicine are potentially more of an encumbrance than a support? Well, we try to get the person home.
With each day that passes, an older person in most UK hospitals will become more dependent, less able to care and support themselves and more at risk of things going wrong – the falls, pressure sores and hospital acquired infections I have discussed before.
And there is the pressure to return people home.
The pressure also relates to the ongoing stream of people arriving at the hospital’s front door, thanks to the highly efficient system described above.
The problem is, getting out of hospital is much harder than getting-in.
One example might be ‘stairs assessment’ – this is a standard physiotherapy trope that is applied to anyone who lives in a house or has stairs somewhere they live. The theory being, if you aren’t safe on the stairs, you aren’t safe to go home, so you remain where you are until we get you safe on the stairs, or, as is sometimes the case, we board-up your stairs so you can’t see or feel the need to climb them (this is sometimes done with people who are living alone who have dementia or cognitive impairment) – (again, this subject is for another day) – which makes me think of my visit to Holland.
R and her steep Dutch stairs
For those people who are unable to return home – because their ability to walk has deteriorated – sometimes because of illness, other times because of hospitalisation alone, we start to think of other ways to facilitate discharge. (this is when the discharge teams – a growing body in our hospitals) get to work.
And now, this is where I intended to begin – an explanation of Intermediate Care…
The Intermediates & Generic Sybil
Let us take a generic old lady, we will call her Sybil. See above.
Sybil, after moving through the complexity that is the admission process to hospital is now considered ‘medically fit’ – for an explanation, see here.
Where can Sybil go?
Before suggesting next steps, let’s add some more detail to Sybil. (Sybil is fictional)
Sybil is 89 years old. Her husband Eddie died eight years ago. She has a son and a daughter, Jenny and Colin, who live in Ireland and London respectively.
Sybil lives in a three-bedroom house in a suburb of Doncaster.
Sybil used to work in the local clothing factory. Since she retired she has been involved supporting the work of the WI. She has friends who live close-by; many of them are becoming increasingly frail.
Sybil has type two diabetes, heart disease, asthma and bad osteoarthritis.
Do you get the picture?
She has shiny white hair which she has coiffed every Wednesday.
I won’t give you more information – I could go-on for many more pages, describing in more detail Sybil’s life, her interests, activities, worries, anxieties, hopes and fear, her health problems, the medicines, constipation; her falls.
Next steps for Sybil
Here are the options for Sybil – described in a stepwise fashion; I will describe them reflecting a generic Sybil who is progressively less fit, less independent and less able.
- Sybil after a few days in hospital goes home. She gets-back to her routine. Perhaps some help from one of the UK charities to start her up again with milk in the fridge. The voluntary sector might link-up with other services to deliver the newish concept of social prescribing – this is the creation of a plan to draw-on the various forms of support around in the form of a prescription – acknowledging that someone to talk to is frequently of more benefit to a socially isolated person than medicine to control cholesterol or blood sugar.
- It is felt that Sybil can go home – here, she requires more support than she had to begin; the concept care-packages (or, packages of care), is initiated. Potentially someone popping in once a day to ensure that all is well, home-care can go up to four or five times a day. This is means-tested, in other words, if you have the money, you must pay.
- Sybil is felt to need both support and some ongoing therapy – most places in the UK have initial short-term programmes, sometimes called ‘reablement’ – a word the NHS learned five years ago to describe the concept of helping someone return to normal with a minimum of support or interference, to facilitate independence. This is often free for six weeks.
- Sybil might already have some care (appreciate I didn’t say that above), we could therefore just re-start this or if it is felt that she needs more care, increase the number of visits – this again is means-tested.
- It could be that Sybil, after her few days in hospital has deteriorated – most often because of a change in her health and is not able to care for herself initially, even with many people visiting through the day; she might need some support at night. The next place, in Doncaster, at least is called PSU.
PSU – Positive Step Unit (which I heard last week, ironically doesn’t have any steps) – PSU is a care home in Bentley, North Doncaster which can support people who are not adequately recovered to return straight home. It is run by the council and the care is delivered by social care staff – that is, people who are not clinically trained.
People can stay at PSU for somewhere in the region of six weeks – some stay less, others longer – the intention is to optimise independence; stop doing so much for patients as happens in hospital and do more, with; help washing and dressing rather than washing and dressing, support eating rather than feed. This is central to the UK’s social care philosophy.
This is free, paid-for by the council.
You can go to PSU so long as you don’t have any needs that might require the regular presence of a nurse or, you are not too dependent (that is, need too much support) or are too confused.
After PSU, you might go home with support from carers, equally, home might not be considered safe, feasible, or desired and you may have to move to a residential home.
Residential Homes – are residences licensed in the UK by the Care Quality Commission to provide residential care for people – this is, care and support that can be provided by staff who are not nurses or in possession of professional qualifications.
We also have EMI and non-EMI Residential Homes* – the later for people who are just old and struggling with independence, the former for people who are (usually) old and struggling with independence and who have dementia. (see below).
*thanks Drina for spotting the error!
As a significant proportion of people lining in non-EMI Residential Homes do have dementia, this distinction can be difficult to conceptualise.
Nursing Homes – as above, only the care is overseen by a nurse; there are two varieties of Nursing Home in the UK –
Standard NH – for people with complex health and social care needs to are unable to live at home – for example, a person who cannot leave their bed, who has requirement for different nursing interventions – dressing changes, catheters, and so on.
EMI NH – this old & antiquated term (Elderly Mentally Infirm) – describes nursing homes for those who have significant symptoms of dementia; there are many people with dementia in standard NH’s, it is just that they are less of a challenge to support. For example, the people because of their physical debility are less likely to get-dressed and leave the building and become lost. (as above)
Sorry for all this jumping up and down…
(I started writing this a few weeks ago and re-reading makes me see both the complicated overlapping nature of much I have described as well as the repetition.)
Another pathway we have been working-with in Doncaster for the past few years has is CAP – this stands for Complex Assessment Pathway. (Funnily, when describing to some medical students the history of IC in Doncaster I covered the original name for this – NRP – Non-Reablement Pathway (aka people we can’t get better or improve pathway) – it was as far as I know conceived by a manager somewhere.
What was funny to me was how obviously terrible a name NRP was to the students; I remember having to fight to change the name back then as the folk in charge couldn’t see the problem – perhaps this reflects a growing sense of understanding beyond the mechanics of medicine for our up and coming doctors of tomorrow.
CAP – this is for patients who are too ill or dependent for PSU – that is, residential care, but, who cannot go straight home (or, back to the Residential Home where they might have been living prior to their recent hospital admission) – they, then spend up to six weeks – sometimes less, often, more in one of several nursing homes in Doncaster.
As a further layer of treacle, CAP is also split, like RH and NH into EMI and Non-EMI* – that is, nursing homes for people with or without dementia; the former for people who have maybe experienced catastrophic strokes, who require support with eating and drinking, who have urinary catheters or feeding tubes, wounds or complicated medicine regimes.
(*Possible subject for next campaign name & concept change after we have addressed pyjamas.)
EMI CAP is for people with dementia who display behaviour that is sometimes difficult to manage – again, in Doncaster – and this, I think is special to our community, we have two tiers of EMI CAP – those who have (not sure of the term…) straightforward dementia and those who have more complicated symptoms. I support the care of the latter group of patients, some of whom it transpires do not have dementia but prolonged delirium, enabling them to eventually return home.
I have left-out two directions of hospital discharge that potentially precede PSU or CAP; these are:
Intermediate Care Hospital
Our Intermediate Care Hospital – this is based at Tickhill Road; it is a site run by the local mental-health trust who also run services delivering community care, that is, district nurses, therapy and so on.
There a ward support people who potentially no longer need to be in acute hospital (that is a building that has 24/7 medical presence, A&E, intensive care) but, still need some hospitalisation. Here they patients, and I use the term patients intentionally, rather than residents or clients receive medical, nursing and therapy support, in an environment that is supposedly less clinical. I haven’t been across in a couple of years to look around; I suspect there is likely not much difference architecturally or structurally to the acute hospital other than no doctors after 5pm. The aim of this service is to support people to return to health adequately to go home; some need to move to PSU, few need to move to CAP – I suspect the latter group are usually transferred back to the acute hospital prior to any discharge plans.
Two further concepts exist, particularly in relation to this hospital which are important to understand before moving-on:
Step-up and step-down.
Step-up is when a person moves into the hospital from the community without necessarily being admitted to hospital. The idea being that as compared to hospital admission (through A&E) this is a less dramatic transfer, potentially to support those whose needs are less medical and more social – that is to support convalescence after a chest or urine infection or a fall.
Step-down is when a patient moves from the acute hospital to the IC hospital – the concept being that the level of care lessens, facilitating independence; this is not hospital discharge, as the NHS is still providing care, but, potentially without the high-cost associations of Intensive Care or round-the-clock medical cover.
And then we have our rehabilitation hospital.
This is an interesting place, situated in the Don-Valley at the site of what is still today the Montagu-Mexborough Hospital; the Montagu part is named-after the wealthy family of landed gentry who helped establish the hospital in the 1800’s (with help from miners stipends).
More recently the hospital has focused on rehabilitation, day-case and outpatient services, much of which has been supported by the Fred and Ann Green Fund – named after Fred Green, the Mexborough Greengrocer who was a founder of Associated Dairies. Asda.
We opened the Fred and Ann Green Rehabilitation Centre in 2013, with the intention of providing rehabilitation facilities to people from the local and surrounding areas.
The place is great, lots of space and big windows.
The hospital provides care or support for those patients who it is felt have ongoing predominantly therapy needs – that is physio, occupational, speech and language needs. As a distinction from Tickhill Road hospital above, there are doctors on site seven days a week, although not through the night. The notion being that the patients here are sicker than those who might be at Tickhill Road but better than those who are at the main acute hospital.
Patients leaving this hospital can either move home, to PSU or CAP beds.
There are a group of other pathways for people who have predominantly mental health needs. I won’t go into this in any detail as it is outside the scope of this document.
Essentially, the mental health teams – that is those doctors, nurses and therapists supporting people who have primarily mental health diseases – depression, schizophrenia, dementia (again, this is complicated and probably for another day), bipolar disorder, do all they can to support people in the community – that is, in their own homes; this makes sense – if a person is not physically ill, they should not be in hospital.
This all blurs when people are no longer able to care for themselves because of their mental health condition or they are potentially a risk to themselves.
As I said, I am not going into this in too much – essentially, for those requiring inpatient care (within the catchment area of older people, which in the case of the mental health world, is anyone over 65 years old), there are two facilities – the organic ward and the functional ward, for organic and functional illnesses respectively.
Organic mental health relates to diseases that affect the structure of an individual’s brain and cause psychiatric illness – this in other words, is dementia, the other functional ward is for depression and anxiety.
To my mind this is all contentious as surely all mental health is organic – relating to levels of neurotransmitters. Perhaps this is also something for another day.
Last months of life
The final cohort of patient that you might want to consider within intermediate care are those who are determined to be at the end of their lives.
I always find this a difficult area – for several reasons; it is very emotive, it is something that is outside the routine of our 21st Century concepts of living and, it is very uncertain. The notion of, ‘Doctor, how long do I have,’ ‘Four weeks,’ belongs to Richard Gordon’s world.
Effectively we split a person’s remaining life into blocks of expected survival – this is those people who we can’t establish when they might die, those who have a year or less to live, those in the final three months and those with days to live.
It seems quite simple when described in this way; when you interpret the layers of emotion, health, pain and distress intertwined with this, you start to realise how hard it can be to take a person and assign them a timeline.
I will focus on those people who we perceive are in the final three months of life. I say three months, as anything more or longer, likely flows down a separate health and social care pathway.
If you have disseminated cancer, advanced dementia, or are frail to the extent that you cannot walk, eat or drink, most people would consider it appropriate to determine whether you meet ‘fast-track’ criteria – these predict whether you will live for three months or more.
If you meet these criteria (which are determined by some science, some experience and some guess-work), the system deems you to require Continuing Healthcare – all your care, treatment or support is considered to relate to health – the NHS therefore support wholly, without dependence on the social care system (although the social care system might provide physical support), the mean-testing I have mentioned above is kept-out. The NHS pays for all your care and treatment.
This in many ways is fantastic – it enables people and their families to focus on care and support in the last few months of life, rather than completing complex documents require of social care. People who are in the last months of life do not need to undertake a journey through PSU or CAP or any of the other steps that lie before an other older person who has found themselves in bed in hospital.
As to whether you meet the criteria as I have described, is a little grey and one person who receives the full fast-track service might have the same needs as another individual who must follow the confusing journey I have described above, to leave hospital.
I appreciate this document is not for everyone – I intend it to accompany some of the teaching I provide in the hospital and there are likely some errors of fact, for which I am solely responsible.
We are constantly working to refine the ways that people, particularly those who are older and frail interface with the health and social care system.
All this is increasingly difficult because of external pressures, predominantly from the government which has a certain trajectory, which, to many of those in the system is at odds with the best interests of those we support.
The system will continue to grow and expand, new ideas will be conceived, new ways of considering how we keep ourselves and our society and sanity together. If we continuously think people not patient, put the person first and the system second, we are likely to improve.
Anyone who feels I have wrongly represented or interpreted the system, please, let me know and I will amend. We are all seeking the same things – to care and be kind, to support, sustain and move forwards.