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Monday, 26 May 2014

The ‘F’ word that no one wants to hear

Most older people are frightened of having them, most relatives of those older people are equally concerned by them, and most health and social care services are under pressure to avoid those in their care having them. Falls really are the ‘F’ word that no-one wants to hear.
 
The fear of falling that older people have stems from a variety of reasons - the most notable include the likelihood of injury (possibly serious injury that could include hospitalization, operations and long-term rehab - which could include a prolonged spell of being bedbound and/or needing residential care) and the loss of independence and confidence that a fall often brings. Other psychological problems include embarrassment, feelings of becoming a burden to others, and ultimately isolation from potentially not being able to get out and about as you once did.
 
If a person has osteoporosis, a fall is a serious matter. Broken bones, when you already have a condition where your bones are weak, is clearly something to be avoided. Post-menopausal ladies are particularly susceptible to osteoporosis and the drug treatments currently available are controversial, with some people claiming that they actually increase the chances of brittle bones.
 
For the relatives of an older person, the implications of a loved one falling can be huge, not just from the point of view of being incredibly anxious for their wellbeing (particularly if they need an operation), but also because a bad fall could lead to a long-term caring role if it leaves your relative less independent. The desire to minimize falls can often leave families wanting to wrap their loved one in cotton wool, but that in itself could lead to an older relative wanting to take more chances just to prove what they can do.
 
Risk-aversion, however, is something most commonly associated with health and social care professionals, as I wrote about here. Their services are often judged on the amount of falls those in their care have, and since serious falls can also lead to death from other complications in very frail individuals, they are under immense pressure to minimize falls. 
 
I dislike bringing every health issue back to finances, but it is a well-known fact that falls cost the health service a lot of money – in excess of £2billion a year.  Add in the pain, worry and potential long-term care implications and you would have a much higher figure (if indeed you could even put a cost on those). Despite this my dad, a gentleman who had multiple falls during the time when he was compelled to walk due to his dementia, was only ever given hip protectors and a crash mat by his bed to help minimize his chances of breaking bones. Possibly a hard-hat might have been more use on the occasion when he burst a blood vessel in his head from a fall and required staples in A&E.
 
Meanwhile, if you are an older person who is already in hospital, don't assume you are necessarily safe from falling. I recently heard about an internal study on falls that was conducted by an NHS Trust providing older people's inpatient mental health services. Amongst the stats they collected, they discovered that the people falling in their care were on average being given 4-12 different medications.
 
More worryingly, despite discovering this (which personally I don't find surprising), they didn't present either an explanation for such a significant level of polypharmacy or a proposal for how they were going to tackle it. Chances are little was really understood about these multiple drug interactions, and it was going to take a pioneering medical and pharmacy team to enable them to systematically review each patient and reduce their medications.
 
Although required to prescribe less antipsychotics in the treatment of people with dementia, medics often use other drugs such as antidepressants or sleeping tablets to make patients more 'compliant'. However, the effects on their cognition and ability to be alert enough to move around safely is likely to be severely impaired, and that is to say nothing of the side-effects and interactions from all of their other meds.
 
In this Trust, and indeed any health and social care service where older people are having falls, I would like to see a complete prescription policy review, environmental changes (for people with dementia), regular OT input that helps people with exercises (including for balance), and investment into stimulation and boredom-reducing activity. Alongside this needs to be sensory assessments (to check for eyesight problems that could affect a person’s ability to see where they are going, or hearing problems affecting balance), assessments for other medical conditions that could lead to an increased risk of falls, careful consideration of foot health and suitability of footwear, and appropriate provision of walking aids as required. Last, but by no means least, there must be safe staffing levels in health and social care environments.
 
It cannot be overstated just how important safe staffing levels are. Firstly they ensure adequate supervision, which whilst it won't prevent every fall will stop some and enable learning and change to happen to promote further falls reduction. Secondly they will provide support to people who want to (and need to) move around. Mobility is vital but it often requires support and for that to be available in a timely fashion, for example if a person wants to go to the loo urgently. 
 
Imagine being an older person needing the loo, asking for help to get to the loo, that help not being forthcoming, getting desperate and trying to go on your own, falling and then soiling yourself - a more undignified scenario you really cannot contemplate. The opposite outcome is a health or care professional coming to assist you on your first request, helping you to the loo, waiting for you (not returning 30 minutes later when you've got so fed up of waiting you've tried to move and fallen) and then helping you to get to wherever you need to go.
 
We have to elevate falls prevention (without becoming overtly risk adverse) into the priority it clearly is. NICE issued this guidance and there is plenty more well-researched literature, including this from the Kings Fund. We know falls are bad news for everyone involved, but for the person falling most of all. We talk extensively about the dignity agenda in the health and social care of older people - preserving that must include proactive falls reduction. The nature of the human spirit is such that we will never prevent every fall, and in trying to could stifle people's liberty in a totally unacceptable way, but the simple measures that are possible must be implemented.
 
Until next time...
Beth x







You can follow me on Twitter: @bethyb1886

Saturday, 24 May 2014

Talking about dementia... with your patient

Welcome to the last of my seven ‘mini’ blogs for UK Dementia Awareness Week 2014.

Concerns that a person is developing dementia aren't just restricted to that individual - they also affect those closest to them, bringing complex relationships into play. Over this Awareness Week I want to look at some of the emotions and reactions that underpin the difficult conversations thousands of people are having, or thinking of having, as they open up about dementia.

Day 7 - 'A good bedside manner'

Even for professionals who have (we hope) been trained in how to broach the subject of dementia, it can be a difficult step. Many doctors and nurses have told me that despite the increased awareness of dementia, raising concerns about the potential development of it to a patient isn't easy. Indeed, one of the key objections to the idea of screening people for dementia was the way in which it could potentially alter the doctor/patient dynamic, and force very uncomfortable (and in many cases inappropriate) conversations.

During the period of my father's diagnosis, the medics we met really didn't cover themselves in glory in terms of their method and manner of communication or their ability to explain, empathize, reassure, personalize or indeed work with us as a family. It was a very prescriptive experience, and we didn't appreciate the feeling that we were being processed through a system.

A doctor with a genuine concern that a patient is developing dementia should be one of the best-placed people to help that patient, but it should never be about ticking boxes. An empathetic conversation that includes signposting to support and advice is a doctor’s role, but in amongst raising those concerns it is vital to remember that for the majority of patients there will be other people in their life, as I have explored in my last six blog posts, who will also be affected by any potential diagnosis.
 

Opening up to a person you know about your concerns that they may be developing dementia is a conversation most people dread and many seek to postpone for as long as possible. For help and advice on how to broach the topic of dementia, read my blog post 'Having THAT conversation'.
 
Until next time...

Beth x







You can follow me on Twitter: @bethyb1886

Friday, 23 May 2014

Talking about dementia... with your employee

Welcome to the sixth of my seven ‘mini’ blogs for UK Dementia Awareness Week 2014.

Concerns that a person is developing dementia aren't just restricted to that individual - they also affect those closest to them, bringing complex relationships into play. Over this Awareness Week I want to look at some of the emotions and reactions that underpin the difficult conversations thousands of people are having, or thinking of having, as they open up about dementia.

Day 6 - 'The understanding employer'

I would venture to suggest that most employers - when questioned about their approach to an employee developing dementia - would say that they can’t cope with employing an individual should they have an official diagnosis.

A greater hammer-blow to a person with early-onset (young-onset) dementia, who may still be in full-time employment and relying on that income, is hard to imagine. It arguably ranks alongside losing your driving license as one of the most pivotally disempowering moments for a person who has developed dementia. Yet looking at each person’s situation individually, and trying to make reasonable modifications to their workload or environment, could enable an employee to continue to work for as long as possible if they want to.

Given the myth that still proliferates that dementia is a disease of ageing, many employers would potentially not think of dementia even if an employee of working age is exhibiting dementia-related symptoms. Yet with the drive to boost diagnosis rates, understanding what dementia is, and how your business could help an employee developing dementia (or indeed an employee who is a carer for an individual with dementia) will become increasingly important.
 

Opening up to a person you know about your concerns that they may be developing dementia is a conversation most people dread and many seek to postpone for as long as possible. For help and advice on how to broach the topic of dementia, read my blog post 'Having THAT conversation'.
 
Next post on 24 May 2014.
Until then...

Beth x







You can follow me on Twitter: @bethyb1886

Thursday, 22 May 2014

Talking about dementia... with your neighbour

Welcome to the fifth of my seven ‘mini’ blogs for UK Dementia Awareness Week 2014.

Concerns that a person is developing dementia aren't just restricted to that individual - they also affect those closest to them, bringing complex relationships into play. Over this Awareness Week I want to look at some of the emotions and reactions that underpin the difficult conversations thousands of people are having, or thinking of having, as they open up about dementia.

Day 5 - 'Being neighbourly'

As the theme tune for a popular Australian soap told me throughout my youth, ‘Everybody needs good neighbours’. Sadly a lot of neighbourly spirit has gone out of UK society, but caring about those living near to us is a key aim in making our communities friendlier for all who live in them.

If a person is developing dementia, particularly if they live alone and have few visitors, the people best placed to help them can be their neighbours. From checking on an older person during bad weather, to helping someone living near to you who may become very needy or persistently lock themselves out, being a good neighbour can make a real difference to an individual who is developing dementia. It can also help to prevent the isolation that is so often a precursor to a diagnosis of dementia.

If a neighbour’s patterns of behaviour change dramatically, you may be the only person who notices that and is in a position to help them. Offering companionship and talking to them about your observations, rather than just ignoring them, is really at the heart of any friendly community.
 

Opening up to a person you know about your concerns that they may be developing dementia is a conversation most people dread and many seek to postpone for as long as possible. For help and advice on how to broach the topic of dementia, read my blog post 'Having THAT conversation'.
 
Next post on 23 May 2014.
Until then...

Beth x







You can follow me on Twitter: @bethyb1886

Wednesday, 21 May 2014

Talking about dementia... with your friend

Welcome to the fourth of my seven ‘mini’ blogs for UK Dementia Awareness Week 2014.

Concerns that a person is developing dementia aren't just restricted to that individual - they also affect those closest to them, bringing complex relationships into play. Over this Awareness Week I want to look at some of the emotions and reactions that underpin the difficult conversations thousands of people are having, or thinking of having, as they open up about dementia.

Day 4 - 'A friend in need'

Blood may be thicker than water, but there is also an old saying that you can choose your friends but you can’t choose your family. For some of us, our friends are our lifeline and the closest people to us.

Seeing changes in a good friend that makes you suspect that they are developing dementia poses a huge dilemma for many people, who may feel that they risk their treasured friendship if they mention their concerns to the person they are worried about. Even the most steadfast friendships can go through rocky stages, and for some people with dementia, fierce denial of the problems they are having can lead to them cutting off those who care about them.

Good friends are well versed in the challenges of this unique relationship, but whilst family members are routinely recognized as reliable advocates for a relative who has dementia, a friend’s status is often much more blurred, and can lead them into conflict with a family or professionals. If, however, there is one time when a person needs a little help from their friends (close friends more than just ‘Dementia Friends’) it would be when they are living with dementia. Many people with dementia report losing 'friends' as one of the most distressing aspects of a diagnosis of dementia – a good friend can literally make the difference between whether an individual lives well with dementia or not.
 

Opening up to a person you know about your concerns that they may be developing dementia is a conversation most people dread and many seek to postpone for as long as possible. For help and advice on how to broach the topic of dementia, read my blog post 'Having THAT conversation'.
 
Next post on 22 May 2014.
Until then...

Beth x







You can follow me on Twitter: @bethyb1886
LIKE D4Dementia on Facebook

Tuesday, 20 May 2014

Talking about dementia... with your sibling

Welcome to the third of my seven ‘mini’ blogs for UK Dementia Awareness Week 2014.

Concerns that a person is developing dementia aren't just restricted to that individual - they also affect those closest to them, bringing complex relationships into play. Over this Awareness Week I want to look at some of the emotions and reactions that underpin the difficult conversations thousands of people are having, or thinking of having, as they open up about dementia.

Day 3 - 'Bonded by blood'

In the concentration of written material about a partner or parent developing dementia, little notice is often paid to the siblings of those people. Even less thought is given to what it must be like to see your twin developing dementia.

For siblings with close bonds and in similar age brackets, this is perhaps the one relationship that offers the most stark insight and poses the question – why did my brother/sister develop dementia and I haven’t? Moreover, am I more likely to in the future?

Those concerns over genetics add to the emotional and practical effects of a brother or sister developing dementia, yet in the midst of that turmoil a sibling is potentially the one person who could help their brother or sister the most. A close sibling that a person with dementia has grown up with, and known all of their life, is often the best-placed individual to enable that person to live well with dementia through utilizing a whole host of therapies, including reminiscence.
 

Opening up to a person you know about your concerns that they may be developing dementia is a conversation most people dread and many seek to postpone for as long as possible. For help and advice on how to broach the topic of dementia, read my blog post 'Having THAT conversation'.
 
Next post on 21 May 2014.
Until then...

Beth x







You can follow me on Twitter: @bethyb1886

Monday, 19 May 2014

Talking about dementia... with your parent or grandparent

Welcome to the second of my seven ‘mini’ blogs for UK Dementia Awareness Week 2014.

Concerns that a person is developing dementia aren't just restricted to that individual - they also affect those closest to them, bringing complex relationships into play. Over this Awareness Week I want to look at some of the emotions and reactions that underpin the difficult conversations thousands of people are having, or thinking of having, as they open up about dementia.

Day 2 - 'Role reversal'

As regular readers of this blog will know, it is the relationship between parent and child that underpinned my personal experiences of dementia. As my father's vascular dementia gradually advanced, I lost crucial parental stability in some of the most important years of my life – my teens and twenties. Equally, my father also lost out though being unable to enjoy those years with me in full cognitive health.

The roles of parents and grandparents, children and grandchildren are very clearly defined in most people's understanding of family makeup. Yet dementia has the ability to turn those relationships on their head. It rarely happens overnight, giving you time to adjust in some respects, but I don't think anything can really prepare a child for having to take on a role that is likened by many to becoming a parent to their parent.

Concerns that your parent or grandparent are developing dementia can be devastating both emotionally and practically. Equally, from the point of view of your parent or grandparent they may be feeling very fearful, worried that they are letting you down, or concerned by a perception they have of becoming a burden to you.


Opening up to a person you know about your concerns that they may be developing dementia is a conversation most people dread and many seek to postpone for as long as possible. For help and advice on how to broach the topic of dementia, read my blog post 'Having THAT conversation'.
 
Next post on 20 May 2014.
Until then...

Beth x







You can follow me on Twitter: @bethyb1886

Sunday, 18 May 2014

Talking about dementia... with your partner

Welcome to the first of my seven ‘mini’ blogs for UK Dementia Awareness Week 2014.

Concerns that a person is developing dementia aren't just restricted to that individual - they also affect those closest to them, bringing complex relationships into play. Over this Awareness Week I want to look at some of the emotions and reactions that underpin the difficult conversations thousands of people are having, or thinking of having, as they open up about dementia.

Day 1 - 'From lover to carer'

Whatever your age, and regardless of whether you are heterosexual or a member of the LGBT (Lesbian, Gay, Bisexual or Transgender) community, married, living together or in any other partnership relationship, seeing changes in your soul mate that indicate that they are developing dementia can produce some very stark emotions.

Most partners are together believing that they will grow old as a couple and dream of spending their lives sharing in the things they enjoy most. It is natural to look at the more confronting aspects of your partner's long-term prognosis with dementia and imagine your life changing from being a lover to a carer.

Dementia is perceived to be a hammer blow to a relationship, but I've known many couples who have adjusted well and remain loving and devoted to each other throughout one or both partner's dementia. Likewise a diagnosis, for some, can enable them to understand changes in their partner that without a medical cause could become grounds for divorce.
 

Opening up to a person you know about your concerns that they may be developing dementia is a conversation most people dread and many seek to postpone for as long as possible. For help and advice on how to broach the topic of dementia, read my blog post 'Having THAT conversation'.
 
Next post on 19 May 2014.
Until then...

Beth x







You can follow me on Twitter: @bethyb1886

Monday, 12 May 2014

“Will you help me, please?”

These are the heart-breaking words of 98-year old Yvonne Grant, calling for someone to help her to the toilet in secret filming captured by her family and aired by Panorama ‘Behind Closed Doors: Elderly Care Exposed’.

In this hour-long programme, viewers are shown older people in care homes being neglected and abused, call bells being ignored, verbal and physical assaults, and staff who are either completely unsuitable for the job they are doing or, as a few glimpses of footage show, some very good staff who - whilst overstretched - are caring people who want to do their best for the frail older people who are depending on them.

For me, having been by my father's side through 9 years in social care (punctuated by spells in hospital), I saw things then that didn't represent good care on more than one occasion, and as I have already written about, I had cause to call in CQC when my father's care deteriorated (‘From care to catastrophe’). Whilst I have never seen the type of physical abuse depicted in the programme, it's important to remember that many aspects of poor care aren't any less abusive just because they don't involve physical violence. 

You will struggle to find anything in this programme that represents what most people would want care for their loved one to look like, defined in the current overhaul of CQC’s inspection process as ‘The mum test’ – namely asking if a provider is delivering care good enough for our mums and dads, grans and granddads, siblings, cousins and wider network of loved ones. New key-lines of enquiry for CQC inspectors will ask if a service is safe, caring, effective, responsive and well-led – everything that is absent in this footage.

In the consultancy work I do now I've seen practice that wouldn't pass the 'mum test' for me. Providers don't always get it right, sometimes through failings they want to learn from and make long-lasting improvements because of. However in other cases, as we heard in the Panorama programme, there are some providers who are ‘content’ to bump along the bottom, treading the fine line of previous inspection regimes that defined a provider as being either compliant or non-compliant.

As members of the public we expect that regulation of care providers will root out all poor practice, but as the Panorama programme clearly showed, regulation alone isn't enough. From my personal perspective, it certainly wasn’t enough to prevent my father from aspirating on his own vomit five times and being admitted to hospital with aspiration pneumonia and pressure sores.

The overhaul of the CQC inspection process that is currently out for consultation  – including looking at the issue of cameras in care homes -  gives me some hope for the future, but however robust inspection becomes, and however much quality and innovation is made an intrinsic part of the regulator's role, CQC alone cannot ensure that every service is good enough for our loved ones.

Inspection is but a snapshot of a service. Done well by a team that includes a well-trained inspector, an expert by experience and (where necessary) a specialist expert (for example in dementia, palliative care or pharmacy), against key lines of enquiry that focus on what good should look like, it will expose most services that require improvement or are inadequate.

For me, however, the real key to unearthing insidious poor practice (and equally excellent practice) comes from intelligent monitoring. In other words, whistleblowing staff, relatives and visitors, including visiting health and social care professionals - the people who see what happens on all the days of the year when the CQC team aren't present. 

In an ideal world we would all be the eyes and ears of CQC, but in practice whistleblowing has become a concept that instils fear whenever someone considers it, as I described in ‘Putting your head above the parapet’. Fear in professionals that they will be ostracised and deemed unemployable, fear in relatives that their loved one will be victimised because they have spoken out, and fear from those receiving care that they will be silently killed for complaining.

In that climate, poor care and abusive practices can proliferate and this must change. We need the culture of whistleblowing to be encouraged and respected. Confidentiality, alongside a proper weighting of evidence - rather than a previous attitude of ignoring what hasn't been corroborated over a long period of time by numerous others (who may be too frightened to speak out) - is vital.

There are other suggestions too. One of the most innovative ideas I’ve read is that care homes should have boards of governors in the way that schools do. Private sector care providers are offering a service in the same way that private schools are, and both exists to nurture vulnerable members of society, just at different ends of the age range. Governors that are drawn from a cross-section that includes representatives of those receiving care, relatives, friends, health and social care professionals and wider community leaders could rejuvenate every aspect of social care.

It cannot be the case that we rely on TV programmes to occasionally shine a light onto the plight of a minority who receive a service that is so short of being caring it shocks the nation. Families resorting to installing cameras to prove what is happening to their loved ones, and then watching in tears as the full extent of their suffering is revealed, proves that we woefully short of a culture of open accountability.

As a nation we have to demand better for our loved ones. As professionals we have to find a way to deliver better care. And as the majority of good social care providers would say to the minority who are failing: If you can't deliver a service that is safe, caring, effective, responsive and well-led then go into another sector, far away from the care of vulnerable people. 

As Yvonne said: “Will you help me, please?”

Until next time...
Beth x







You can follow me on Twitter: @bethyb1886