Words that make me go hmmm: Needs

“Needs: the things you must have for a satisfactory life.”

Cambridge dictionary [1]

“Needs: a catalogue of things that mark you out as not quite human. Nobody else on the planet has these things.”

Mark Neary [2]

Needs are ‘the things we must have for a satisfactory life’. There are the basic things we all need to stay alive – like food, water, air, shelter, and sleep, and to feel safe and secure. And there are the things that give us reason to live. The need for belonging and connection. Family and friendships. Love and intimacy. Dignity and respect. Freedom. The need to be recognised, accepted, and valued. The need to have something to do, and to look forward to. To have meaning and purpose.

References to needs dominate our narrative and our practice. There are 1690 references to needs in the care and support statutory guidance.[3] The guidance refers to nutrition, hygiene, clothing and “toilet needs”. It mentions the “need for information and advice” and “need for independent advocacy”. “Communication needs” and “mental health needs”. The “need for care in a care home”, and “need for a cross-border residential care placement”. The “need for NHS Continuing healthcare” and “need for nursing care”.

But there’s no mention of the need to belong, and scant references to connection. While “family or other personal relationships” are referred to, there’s no mention of love, and the only references to touch and intimacy relate to abuse or “intimate care needs”. Dignity and respect get a nod in relation to ‘wellbeing’, but there’s no reference to recognition or acceptance. There’s no mention of fun or adventure or delight or joy.

“Our social service system counts only certain needs – for safety, shelter, food, income and physical care. It has few ways of understanding people’s needs for adventure, purpose, connection and growth.”

Gord Tulloch and Sarah Schulman [4]

I want to use this blog to illustrate how our use of the term ‘needs’ is more aligned with Mark Neary’s definition of need than with the dictionary definition, and how the way we use this one little word highlights so much of what must change about our current practice.

Care and support needs

When we talk about needs in social care serviceland, we mean “care and support needs”. Needs for care and support that “arise from or are related to a physical or mental impairment or illness” or “as a consequence of providing necessary care to an adult.”

The statutory guidance describes care and support as “the mixture of practical, financial and emotional support for adults who need extra help to manage their lives and be independent – including older people, people with a disability or long-term illness, people with mental health problems, and carers.”

Over 11 million people in England and Wales – 18.6% of the total population – are aged 65 years or older.[5] 9.8 million people in England are disabled.[6] About 15 million people in England have a long-term condition.[7] 1 in 4 people will experience a mental health problem of some kind each year in England.[8] And recent research estimates the number of unpaid carers across the UK could be as high as 10.6 million.[9]

Millions of people.

Millions of us.

And yet our language suggests “people with care and support needs” are separate. Other.

“People with care and support needs may decide to move home just like anyone else.”

This terminology doesn’t clarify the needs of a person or group of people, just puts people together in one homogenous group, suggesting ‘they’ are ‘the same’, but also ‘different’ to ‘us’.

Not really “just like anyone else”.

“Those with care and support needs”.

This is classic ‘medical model’ territory, locating the ‘problem’ with the person. Just as the medical model identifies disability as something a person has, like an illness, and something that needs to be prevented, cured, or treated, we identify ‘care and support needs’ as something disabled people have, that ideally should be prevented, reduced, or delayed. This framing paints ‘care and support needs’ as A Bad Thing, and something to avoid. It blames the “person with care and support needs” and deflects our attention from wider changes needed in attitudes, policies, environments, and systems.

The language of ‘need’ defines people as recipients, dependent on others for care and support, needing to be ‘looked after’ and ‘taken care of’. ‘The cared for’. ‘The vulnerable’. It ignores the agency people have (and should have) and the contributions people make (and should be supported to make).

The need to give back.

The need to be needed.

And it continues the framing of care and support as the destination, not the vehicle. We talk about the care and support people need, not the lives people want to lead and the role of care and support in enabling people to live equal, flourishing lives.

Assessing needs

We assess whether a person “may have needs for care and support”, whether the person “does have needs for care and support”, “what those needs are”, if the needs are “urgent”, if they can be prevented, reduced or delayed, if “current level of need is likely to fluctuate”, what “on-going needs for care and support are likely to be”, if the person has a “primary health need”, whether “the adult’s needs arise from or are related to a physical or mental impairment or illness”, if “as a result of the adult’s needs the adult is unable to achieve 2 or more of the specified outcomes”, whether “the individual’s needs impact upon their wellbeing” and “whether, and to what extent, the needs meet the eligibility criteria”.

If the person has “eligible needs” we determine if they’re already “in receipt of care and support which meets their needs”, “which of their needs they would like the local authority to meet”, “how the local authority may meet those needs” and “whether the local authority is “paying for some, all or none of the costs of meeting those needs.”

So many judgements. So many decisions. So much time. So many forms. So many panels. So much arguing. So much power. So much fear.

“Eligible needs” or “needs that are not eligible”.

“Social care needs” or “health needs”.

“Unmet needs” or “met needs”.

In or out.

Hierarchy of needs

The statutory guidance offers assurance that “there is no hierarchy of needs”.

And yet there is.

The classification of need dominates our practice. “Basic needs”. “Low-level needs.” “Higher needs”. “Wider needs.” “Complex needs.” “Urgent needs.” “Changing needs.” “Fluctuating needs.” “Developing needs.” “Ongoing needs.” And on. And on.

Basic needs

We generally define basic needs as the main things we all need as human beings to live, including food, water, air, and shelter. Our physiological, ‘survival’ needs.

Too often this is where we start – and end – our consideration of a person’s needs. And in turn the support we prescribe focuses on ‘life and limb care’ – on keeping people alive but not supporting people to thrive.

Low-level needs

We’re not really interested in so-called “low-level needs” though. Practical, everyday stuff like help with housework, gardening, laundry, or home maintenance. Emotional stuff like isolation and loneliness. The term ‘low-level’ suggests these needs aren’t particularly important, and as such these ‘low-level needs’ are often not prioritised by local authorities in crisis-response mode. Our response to these needs is a leaflet or a signpost to ‘the community’. A firm ‘not eligible’ and an instruction to ‘come back if things get worse’. And things inevitably do get worse, and unmet low-level needs evolve into “wider needs” and “higher needs” and “more complex needs” and “urgent needs”. And so the cycle continues… because the ‘small stuff’ is really ‘the big stuff’. Dignity. Respect. Connection. Belonging.

Complex needs

The other phrase that we must never ever be drawn into is “complex needs”. It’s a shifter of responsibility, a justification for anything, a checkmate conversation killer, all rolled into one. Died a preventable death? Ah yes, but she had complex needs. Entering his 16th year in an ATU? Ah yes, but he has complex needs. LA won’t fund a home care package? Ah yes, we cannot find a provider that can manage his complex needs. It’s the get out clause of all get out clauses. It’s the king of multi disciplinary one-upmanship.”

Mark Neary [10]

The phrase ‘complex needs’ is most definitely used as the get out clause Mark Neary describes, but it’s also a ‘get in’ clause. People feel they need to describe family and friends as having ‘complex needs’ to pass through the ‘front door’ to serviceland. First conversations aim “to ensure that complex needs are identified early and that people are signposted appropriately.” “Professional staff… focus on more complex cases.”

We’ve even built complexity into the term ‘complex needs’, with references in the guidance to “multiple and complex needs”, “highly specialised and complex needs”, “less complex needs”, “more complex needs”, “particularly complex needs”, and “the most complex needs”.

People with “complex needs” quickly become “complex cases” or just plain “complex”.

But like ‘challenging’ and ‘vulnerable’, ‘complex’ is an unhelpful and meaningless term. “Isabelle is 15 years old with complex needs.”  It’s used as a blanket label, and stigmatises, others and blames people who don’t fit neatly into the boxes, processes and services that dominate our ‘system’.

Future needs

“Addressing people’s needs for love, connection, esteem, and self-realization may seem secondary to answering their needs for safety and stability. But these are all concurrent needs. If people… don’t believe in themselves and in the future, they will keep slipping through the cracks, immune to offers of help, caught in an expensive decline.”

Gord Tulloch and Sarah Schulman [11]

“Early discussions in families or groups about potential changes in the future (for example: conversations about potential care arrangements or suitable accommodation should a family member become ill or disabled)” should be “encouraged”. Local authorities must provide information and advice about “how a person might plan for their future care and support needs and how to pay for them, including provision for the possibility that they may not have capacity to make decisions for themselves in the future.”

There are numerous references to future needs in the statutory guidance. But no explicit reference to the need for a future. The need for something to anticipate. The need for hope.

There’s one ‘case study’ that refers to a person’s “plans for the future”. “Stephen [who “sustained a brain injury in a fall”] is articulate and can converse well about his plans for the future which includes detailed plans to meet up with friends and return to work again”. But these plans – Stephen’s anticipated future – are swiftly dismissed when “the social worker judges that because Stephen lacks insight into his personal relationships and future plans, he may well also have trouble estimating his true care and support needs.”

The future is where needs develop, capacity is lost, and care costs escalate. The future is something to fear. “John is 32 and has been referred by his mother for an assessment, who is concerned for John and his future”. “Dave is 32 and has been referred by his mother for an assessment, who is concerned for Dave and his future”.

From needs to rights

As I said at the start of this blog, the way we use the term ‘needs’ highlights so much of what is wrong with current practice. The ‘them and us’ attitudes and behaviours. The view of people as passive recipients, not active citizens. The classification. The judgement. The gatekeeping. The power dynamics. The fear. The reactive, crisis-response mode.

So, what’s the alternative?

The alternative is we shift from a needs-based approach to a rights-based approach.

Flip the narrative from ‘need for’ to ‘right to.”

“Care and support needs” divide people us into ‘them’ and ‘us’.

But human rights are about all of us.

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References

All quotations are from the Care and support statutory guidance unless otherwise stated.

[1]  Needs, Cambridge Dictionary

[2] Parley Vouz Health & Social Care? (An A to Z of Carespeak), Mark Neary, Love, Belief and Balls

[3] Care and support statutory guidance, Department of Health and Social Care, Updated 19 January 2023

[4] The trampoline effect: redesigning our social safety nets, Gord Tulloch and Sarah Schulman, Reach Press, 2020

[5] Voices of our ageing population: living longer lives, Office for National Statistics, 2 November 2022

[6] Disability, England and Wales: Census 2021, Office for National Statistics, 19 January 2023

[7] Long-term conditions and multi-morbidity, The Kings Fund

[8]  Mental health facts and statistics, Mind

[9] Key facts and figures about caring, Carers UK

[10] A new conversation, Mark Neary, Love, Belief and Balls, 12 July 2017

[11] The trampoline effect: redesigning our social safety nets, Gord Tulloch and Sarah Schulman, Reach Press, 2020