A little perspective

When allegations surfaced of dementia sufferers being neglected at Bamburgh Court Care Centre in South Shields, the ‘Fourth Estate’ went on high-alert.

With reports of residents being forced to sleep on filthy mattresses on the floor, mouldy food left rotting in the cupboards and faeces smeared on the walls, it’s no wonder many older people fear going into a care home.

These shocking allegations about Bamburgh Court Care Centre appeared last week in the Daily Mail and this story will no doubt heighten fears about the standards of care in residential homes.

But from what we have seen at Bettercaring, these cases are few and far between and the vast majority of people in care are well treated and lead happy lives.

In truth, nobody knows how prevalent abuse is in care homes, which is why the announcement of a £2 million study by the Department of Health and Comic Relief into the risk of abuse in care homes and the infringement of dignity on NHS wards is timely.

The research, which, crucially, will take in the views of older people, should finally show how widespread – or not – abuse is in care situations.

The results of this research – slated to come out in 2011 – will hopefully demonstrate that abuse in care is rare and that cases such as Bamburgh Court are the exception rather than the rule.

But more importantly, it should help to change perceptions about the industry.

In the meantime, the government has announced plans to strengthen protection for vulnerable elderly people in care homes and ensure those that do suffer abuse can bring the perpetrators to book.

The government plans to make people who have publicly-funded care in private homes subject to the Human Rights Act, which should safeguard them from such things as unfair eviction. Also, self-funders will be able to refer complaints to an independent adjudicator from later this year.

These are all positive steps and should, in time, help to rebuild the industry’s reputation, which has been consistently tarnished in recent years by stories such as Bamburgh Court. It will take a long time to change the public’s perception, but these are steps in the right direction.

Entertaining residents isn’t child’s play

Bingo. A spot of telly. Maybe even a singsong for the lucky few. Or that’s the common misconception of activities in care homes. But having spoken to numerous experts over the last week it’s heartening to see the importance placed on stimulating entertainment.

Yet it wasn’t until I spoke to Sheila Searle – a woman seemingly obsessed in her desire to change care home activities – that the passion of the dedicated activity coordinators became obvious.

Disillusioned by the lack of support, resources, time and poor pay, Sheila gave up her role as an activities co-ordinator in a Buxton care home to set up inspiritbuxton. An online resource for activity coordinators it combines best practice, hints and tips and lots of ideas for activity staff as they aim to improve the service they offer to their clients. It’s a great idea, and should prove to be very successful.

But activity staff are at the coalface of an industry in flux – and are the first to find their services slashed come budget cuts. The result is fewer resources and less time to plan an effective activity programme that stimulates all of the senses.

Having visited a number of care homes now, it’s apparent to me just how hard-working and under-valued activity staff are. They’re the unsung heroes in the care homes. Their work isn’t ‘necessary’ like health or nursing care, nor does it enable the homes to run effectively, like the administrators.

Yet they have more interaction with the residents than anybody else. They’re the ones who make them smile, or challenge them to tr something new, and they’re the ones who break up the monotony and ensure residents aren’t force-fed ‘Cash in the Attic’ day after day.

However, in this world of profit-driven care it’s easy for companies to look over this devotion when the balance-sheet must be pleasing on the eye.

There will be more information on Sheila’s story and inspiritbuxton on Bettercaring shortly.

Magical mystery tour

‘Every day is different’ is usually one of the reasons care home managers give for liking the job – and after spending the last two days interviewing care home managers for Bettercaring.com it’s something I can fully appreciate.

Having visited a number of modern purpose-built homes, I’ve witnessed some excellent examples of best practice and person-centred care first-hand. But at the end of two draining days in Barnet and Bristol, something heart-warming happened; an eager resident took me on a tour of her care home.

Bursting with pride, Violet took over the mantle when the care manager was called away mid-tour. Despite suffering from dementia and relying on a Zimmer-frame for support, she had boundless energy and clearly loved the home and the staff. She’d pause and speak to other residents, describing them to me as “lovely” (and me to them as her “new friend”). And even despite the use of a frame, she kept up a frantic pace.

It didn’t matter that we were simply going backwards and forwards down the same corridor. Violet was enjoying being the centre of attention – and I was enjoying the unique ‘tour’. In fact, it was a shame when the care manager returned and the proper tour resumed.

But Violet wasn’t deterred so easily. She joined us on our mini-adventure around the home, and helped the care manager just like a trusty co-pilot. She even asked if I could move a teddy bear off an empty chair so another resident could sit down!

Eventually Violet lost interest and decided her time would be better spent in the lounge with some of the other residents. There were no goodbyes – she just drifted off.

It hit home just how serious and affecting dementia can be, and although Violet may not remember my name (she forgot it almost instantly) or my visit, she certainly left a profound impact on me.

Little cheer for older people

Alastair Darling has delivered his first budget, but there was little in it to help the millions of hard-up older people in the UK.

Other than stinging those who like a tipple – 55p on a bottle of spirits – there is little in the Budget that will particularly hit pensioners in the pocket. It is more what was not in it that will concern older people.

But first, the good news; as widely anticipated, Darling has increased the winter fuel payments from £200 to £250 for the over 60s and from £300 to £400 for the over 80s.

While the increase is welcome, it will not provide that much help. With some energy providers hiking prices by more than 10% in recent months, the extra £50-£100 will not go far – certainly not far enough to stop pensioners turning their heating down to make ends meet. Overall, prices have increased by more than half in the past five years, while before today the fuel payment had remained static, except for a £100 rise for over 80s in 2003/4.

Staying with energy, the Chancellor has also announced help for the five million people on pre-pay meters, many of whom are pensioners, and who can pay up to £300 more for their energy than those who pay online. He said energy companies should spend £150 million on social tariffs - ways of ensuring that the most vulnerable consumers benefit from the cheapest rates for energy and have access to important support - which could be backed up with legislation, if needed.

Again, this is a welcome helping hand for older people, but doubtless campaigners will say it is not enough.

Other than that, pensioners received precious little mention in the Budget. For instance, there was no mention of a further increase in the basic state pension, which many had been hoping for, especially in light of recent rising energy, food, petrol and council tax costs.

There was also no announcement of measures to help people claim benefits they are entitled to – Help the Aged say that £4.5 billion goes unclaimed each year.

Elsewhere, charities had called for the government to address the massive shortfall in social care funding, which has seen many councils move to provide care services only to those with critical needs. Again, no mention was made of this.

So, with several major issues ignored, and winter fuel payment increases not going as far as many hoped, this Budget is not one to cheer pensioners. And with the increases in duty on alcohol, many won’t even be able to afford to drown their sorrows.

Marching as one

Most people living on the south coast yesterday will have taken one look out of the window and contemplated going straight back to bed.

Faced with gales and driving rain, the thought of going out of the house will not have appealed. But a hardy band of pensioners from Hampshire took up their waterproofs and walking sticks and braved the conditions to march in protest about the state of pensions.

The march, in the centre of Southampton, was to mark the centenary of the state pension and highlight the plight of older people in the county to local MPs.

With rising energy and food costs, many pensioners on the basic state pension are struggling to make ends meet. Don Harper, the secretary of the Southampton Pensioners’ Forum, says the basic pension is now only 15% of average earnings and below the poverty line.

But while many pensioners are struggling, there are ways they can boost their income. Benefits are available to poorer older people – Council Tax Benefit and Pension Credit to name but two – but many are not aware of them or how to claim, or can’t be bothered with the hassle of applying.

Romsey MP Sandra Gidley said benefits are available to pensioners if they “jumped through the right hoops”. That quote shows the nature of the problem – benefits should be easier to understand and apply for and is hopefully something the government will address later in the year as it reforms the social care system.

More immediately, the march was also timed to coincide with today’s Budget. While this protest will not have informed Chancellor Alastair Darling’s thinking there is nevertheless speculation that he will make some pensioner-friendly moves. For instance, a rise in winter fuel payment has been mooted, as has an increase in funding for social care.

Whether this happens, we will have to wait and see. But if moves are not made to make the pensioners’ lot a happier one, then protests such as this could well become a regular occurrence.

Quiche of mind from dementia diagnosis

It’s not often we get to witness the early signs of dementia first-hand – especially when someone might not realise they’re succumbing to the disease – but this lunchtime was a sobering experience for me and staff in the local sandwich shop.

I do my best to bring a packed-lunch most days (I blame the Scottish genes inherited from my dad) but after a particularly lazy night, I thought I’d treat myself today to a good old panini from the deli in the centre of the village.

In between idle chit-chat with the waitress (Keira Knightley’s been in for the second time this week, I’m excitedly told …) an old man walks in, dressed in tweed and with a large green deer-stalker covering his greying hair. It’s cold outside and he looks blustered and weather-beaten. Well-known to the staff – it being a small Oxfordshire village – he asks if he’s been in today.

The staff look bemused.

Not only had he been in, he’d also purchased a quiche and salad barely five minutes before I appeared.

He looks bewildered; the staff concerned. They ask if he’s alright: “I’m fine,” he counters before walking off – oblivious to the confusion – and still holding the quiche and salad he’d bought previously.

There’s a moment of stunned silence. “He’s not alright, is he?” says one of the waitresses. Worried looks pass between them. Of course it could be just forgetfulness – but their concerned faces paint a very different picture.

Friendly banter melts into subdued silence, and I’m left with my own thoughts which, oddly, have nothing to do with a potential encounter with the lovely Miss Knightley.

Dementia: Don’t call us sufferers

Mention the term ‘dementia sufferer’ to James McKillop and he visibly bristles.

For James, who has early-stage dementia, the term is something of a bugbear. He says its negative connotations – it’s easy to think of someone in a care home, unable to do anything unaided – do not reflect the situation for many people with early-stage dementia.

James is enjoying life to the full, pursuing his own interests and spending time with his family. In addition, he travels all over the UK speaking about dementia and talking at conferences as part of the Scottish Dementia Working Group, a campaigning organisation run by people with dementia with the aim of improving services for people with dementia and attitudes towards the condition.

The term ‘dementia sufferer’ also ignores the fact that for many people, being diagnosed with dementia is a good thing. Indeed, he refers to himself as a dementia enjoyer – because his quality of life has improved so much since he was diagnosed.

James is not alone. The selection of members of the SDWG I met last week in Glasgow all say they prefer their lives post-diagnosis.

Instead of thinking their lives were over, and giving up, settling back to wait for the inevitable decline, they have seen it as a challenge and a catalyst to move into a new phase of their lives.

For example, everyone in the group has developed new skills, from photography to sign language. They say it’s not about what you can’t do; it’s what you can do, which is just about anything. While learning new skills may take a little longer for people with dementia, they can still be done.

The SDWG is all about challenging the stereotypes and stigmas often attached to dementia, and shows what can be done. If more people had their attitude to dementia, then ‘suffering’ would never come into it.

More from my meeting with the SDWG will be appearing on Bettercaring.com in the coming weeks.