Category Archives: Health

An ageing population of people living with HIV – helping the care sector to respond

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Our latest guest blog is from Eleanor Briggs, Director of Policy and Campaigns at the National AIDS Trust. She explains how the care system could do more for older people living with HIV.

 

William had a bad experience when he was discharged from hospital to a care home. When he asked for a bath he was often ignored, or left to wait until everybody else had been washed. He was given separate disposable cutlery and when his neighbours came to visit, they were told not to let their child go into his room.  Why? Because William is living with HIV.

This is not a story from the 1980s when we didn’t understand the virus and effective treatment was not available. This was last year. If staff had been aware that there is no risk of transmission from everyday care activities, he would have had a very different experience. His awful treatment was based on ignorance and fear.

In response to cases like this, NAT (National AIDS Trust) has developed a guide for care providers in partnership with Skills for Care and the Social Care Institute for Excellence. This is really needed given the ageing demographic of people living with HIV.   Now 1 in 4 people living with HIV is aged 50 or over, compared to 1 in 8 a decade ago.

This changing demographic is a result of the rise in number of people being diagnosed in their 50s and beyond, plus improved treatment which means that those diagnosed many years ago are now living into old age. Of course it’s a cause of celebration that someone diagnosed in the UK today can expect to have a normal life expectancy – but it also means care providers need to be ready to meet the needs of older people living with HIV.

And what are those needs? To some extent we’re still waiting to find out. There are many unanswered questions about the long term impact of HIV medication and several ongoing studies looking at HIV and ageing. What is becoming clear is that older people living with HIV are more likely to experience conditions related to ageing at a younger age (heart disease, dementia, and arthritis).

But when you speak to older people living with HIV, they are often more concerned about the stigma and discrimination they may face relating to their HIV status. Throw into the mix the fact that the people in the UK most affected by HIV are gay men and Black African communities (individuals that already sometimes face homophobia and racism) and you can see why people are worried.

NAT’s guide sets out clearly how HIV can and cannot be transmitted, as well as providing information about medical care, the importance of confidentiality and the rights of people living with HIV.  Researching this project we did find many examples of good quality care – we now want to make sure that this is the norm so that people like William can feel safe and confident when they need to access care.

For more information about Age UK’s human rights and discrimination work, you can visit our Our Rights Our Voices web pagesIf you have any questions or concerns about the content of this blog, you can speak confidentially to one of Age UK’s expert advisers by calling the Age UK Advice Line free on 0800 169 65 65.

 

My mum, dementia and me

Tommy and his mum, Joan

Today’s blog is from Tommy Whitelaw, who cared for his mum Joan for five years until she sadly passed away in September 2012. Tommy will be speaking about his experiences at Age UK’s Annual Conference on 18th November 2015- you register to attend the conference here.

When my Mum was diagnosed with vascular dementia, I looked at her and thought to myself “it’ll be okay, we’ll get through this.” I soon learnt as her carer that dementia is an unpredictable illness. Her illness brought many challenges and forced us to adapt to ever-changing routines. Many days we would wake up to discover that everything we had grown accustomed to had suddenly changed again.

I wondered whether the struggles I faced were mine, and mine alone. I questioned how other carers who had been on the journey I was just embarking on, had managed to cope.

What struck me throughout was the lack of awareness about and understanding of dementia, and the unhelpful way we perceive the illness in wider society.  My door was always open but no one walked through it, people didn’t come to visit us anymore and I truly believe that was down to the stigma surrounding the illness.

This realisation led to my first venture into the world of awareness-raising, through my ‘Tommy On Tour’ campaign. The campaign involved collecting life stories from people across Scotland who were caring for a loved one with dementia. The hundreds of letters I received proved that the challenges I was facing were far from particular to me, and yet that everyone affected by dementia has a unique story to tell. By sharing our experiences we can help to tackle the misunderstandings surrounding dementia and offer hope to people in the same situation.

Dementia Carer Voices Project

Improving people’s understanding is something I continue to be passionate about. I’m now building on my work with ‘Tommy on Tour’, as Project Engagement lead of the Health and Social Care Alliance’s Dementia Carer Voices Project.

The project provides a platform upon which carers can express their views and experiences of caring for a loved one living with dementia. Through this, it aims to raise awareness among health and social care professionals and wider society, about the impacts dementia has on families and the importance of empowering carers as they carry out this difficult but vital role. I give regular talks as part of my project work, the key focus of which is to highlight the impact that inspirational health and social care professionals can make to the journeys of carers across Scotland.

People who appreciate and understand the unique challenges that dementia brings can be there to prop you up, and I absolutely believe as a carer if I was propped up a little bit with the right help and support, I could have given my Mum the best care and support in the world.

The experience of caring for my Mum undoubtedly brought great challenges, stress, isolation and sadness, but it was a role carried out through love and we enjoyed many touching moments of joy and satisfaction. Those special moments live long in my memory, and gave me a real boost of strength to get through the difficult times, as they continue to do so now.

To book your place at Age UK’s annual For Later Life conference head to www.ageuk.org.uk/forlaterlife.

For advice and support on caring for a loved one, visit our dedicated website pagesIf you have a caring story you want to share, email the Campaigns team at campaigns@ageuk.org.uk to get in touch. You can also find more about Tommy’s work on his blog.

How should we talk about ‘frailty’?

Scene from a care home

In health care, the word ‘frailty’ carries a lot of baggage. In its most positive sense, it is a phrase used by older people’s specialists to describe a particular state of health, usually characterised by multiple or complex physical and mental health and social needs.

This can then be a gateway to proactive care and support joined-up around the individual.

At the less positive end, it is a shorthand for older people in later old age, with multiple long-term conditions that are almost too difficult to manage. In this case the so-called ‘frail elderly’ may be recognised for having high needs but thought of as almost beyond help and given little support.

It is well known that older people do not identify with the word ‘frailty’. This was a strong finding from research we carried out in 2013.

However, we wanted to understand in more detail how older people felt about being referred to as “frail” and whether or not this could impact on their engagement with services. Continue reading

Dignity standards still lacking in hospitals

A new report out this week shows that older patients face a “widespread and systematic” pattern of inadequate care in hospitals.

The report from the Centre for Analysis of Social Exclusion at the LSE, shows one million older people in later life are affected by poor or inconsistent standards of dignity and 1 in 3 people who needed help with eating in hospitals were not consistently receiving it.

The research has broken down data in the Adult Inpatient Survey for 2012 to provide this fresh, detailed picture of older people’s experiences during hospital stays. The report has developed a new approach to analysing the results, one that looks at the relative risks of receiving poor care as well as the overall numbers of people affected. And the results are deeply concerning. Continue reading