All posts by Kirsty

Human Rights Day 2017

My mother died suddenly when only 55 years of age I was just 20 and suffering long term after effects of a road traffic accident.

Her nurturing legacy to me could be simply summed up in two basic principles, which I have tried to pass on and uphold in my own life:

Firstly; “Always remember you are no better or worse than anyone else” and just as importantly; “Do unto others as you would have done unto you.” Give and show respect – remember no one is perfect!

As time has gone by I have realised that these principles were a good foundation to understand human rights, with the UN Charter in 1948 setting the framework that in my view is as relevant and needed today as it was nearly 70 years ago.

AT THIS TIME, it is worth following the link and reminding ourselves of The Universal Declaration of Human Rights: http://www.un.org/en/universal-declaration-human-rights/

The Declaration, with its broad range of political, civil, economic, social and cultural rights, is not a binding document unfortunately, but it has inspired more than 60 Human Rights instruments that constitute an International Standard of Human Rights.

So what is the relevance to us in our daily lives?

Very simply, in part, it is to expect to be treated with respect, fairness, dignity and equality, without discrimination.

We do all have a responsibility and duty to others too and we do all need at times to protect the rights and freedoms of others.

I would argue that currently, for those living with the “outcomes” of long term conditions as a patient, service user &/or carer, that our basic human rights are too infrequently considered.

It is challenging enough in those circumstances, with rare pleasures mixed with pain, disease, hurt, frustrations and exhaustion.

Why is it that we can be made to feel inferior, alone and sometimes stigmatised, even discriminated against, by the very public sector services that are there to support and help improve our health and wellbeing?

That the “personal assets” we bring, through co-production working together, into our treatments may not be taken into account.

I would make the case that this situation could be improved for health and wellbeing by enshrining Parity of Esteem as a human right.

It would ensure equal treatments for all conditions, whether physical or mental health, with training, funding and commissioning distributed accordingly.

It would be about looking at the ‘whole person’ and their needs, which I believe would improve OUTCOMES with sustainability both to individuals, the caring services and of course, the health economy.

In these challenging times around the world, it is all the more important that we all stand up for Equality, Justice and Human Dignity.

After writing this blog and remembering my mother…… I now am counting my few blessings, but hope others find it thought provoking.

 

Evelyn Bitcon (Carer, Advocate & voice for the vulnerable, as well as having own long term health conditions), C4CC Co Production Group member

 

What now? Conversations after a terminal diagnosis

“We never expected the pain he experienced during the last week of his life… The reality was devastating for my husband and it subsequently had a huge and long-lasting effect on me… If we’d been given clear information about what to expect it could have been so different… No one sat me down and gave me information or explained what might happen.”

Pam, aged 60 from Cheshire, lost her husband Bill to heart failure in 2013. They had managed his heart disease and related illnesses fairly well for many years and were led to believe that Bill’s death, when it eventually came, would be peaceful, painless and at home. But when it did come, they were woefully unprepared and left unable to make the choices that were most important to them.

Pam was just one of the hundreds of people Compassion in Dying spoke to who are living with a terminal illness or caring for someone at the end of life. We wanted to understand what it is like to live with terminal illness, what are the challenges and how can they be overcome, and what advice people would give to others in similar circumstances.

People told us that they were often not given information about their prognosis or treatment options in ways they could understand. When they wanted more information, they didn’t always know the right questions to ask. They told us that opportunities for conversations about their care and treatment were missed.

 “The professionals involved waited for us to ask questions but we often didn’t know what questions to ask until it was too late. These were people who had watched many people die, and we needed them to offer more guidance.”

 In response we developed What now? Questions to ask after a terminal diagnosis to help people find the information they need and ask questions, so that they can make informed decisions about their treatment and care – helping them to live well in the time they have left.

What now_publication_1

What now? includes insights from people living with terminal illness, or caring for someone at the end of life. It shows the range of feelings, responses and questions that people can have, and how differently people experience receiving a terminal diagnosis.

People told us that having honest conversations with their families and healthcare teams helped them to understand what to expect, and to make the decisions that are right for them. They also told us that what they wanted to know could be forgotten in the moment, perhaps because the information is hard to take in, or because the conversation goes in a different direction.

What now? includes ‘tear out’ pages with questions people have told us they wanted to ask, so that others can ask them when having conversations with their health and care team. They span all aspects of living with terminal illness, and include questions like:

  • Can my family members be involved in decisions?
  • What kind of changes will I have to make in my work, family life, sex life, and leisure time?
  • What are the best things I can do to stay as healthy as possible?

We hope that What now? will encourage meaningful conversations between people living with terminal illness, their carers and their health and care teams.

Download or order a copy for yourself or the people you support.

 

Written by Natalie Koussa

Natalie is Director of Partnerships and Services at Compassion in Dying,  a charity that works nationally to support people to consider their wishes for the end of life, and to plan ahead to ensure what matters to them is known and can be followed.

Being positive about being positive

Often when we talk about HIV today we forget that for many people and communities, stigma is real. It’s still affecting people and their communities. Moreover, stigma is a tricky little beast; good at hiding.

Throughout the many years that we’ve been challenging these acts of disability-related hate crimes, it seems that many people have not been educated or exposed to the 21st century facts about living with HIV.

This is where stigma gets its mojo – when people perpetrate unkind acts that negatively affect others.

The global management of HIV is one reason people have told me why they haven’t felt able to take a test to find out their status. Their fear of a positive diagnosis, even within the UK where we have the Equalities Act and a strong evidence-based community, stems from personal fear.

Among the many labels out there, we now have another label for people –‘undetectable’. But for me, positive is positive and I ignore the medical narratives of infectious and undetectable.

Labels don’t help anyone manage the challenges of living with HIV – the label fuels the stigma. So, my view is that I’m being positive about being positive.

Too many of our brothers and sisters have poor health as well as psychological and mental ill-health issues related to that stigma.

Stigma is real and tangible to many of us, and I’m fed up with people feeding stigma with its trite treats of denial and apathy. Saying “times have changed” is a main course to stigma.

Walk in my shoes for a day and you would see things haven’t really changed. Intersectionality, the overlapping of discrimination, has an unpleasantly close relationship with HIV.

You could serve a smor- gasbord of HIV + poverty + BME + women + LGBTQ + groups that are so under the radar they are barely mentioned by the system.  These groups are stigmatised and living with stigma on a daily basis.

How can we really make a difference? It’s been over 30 years since the epidemic started affecting so many communities. I want to say to the world that we need to eradicate stigma with kindness and openness.

To mark last year’s World AIDS Day 2016, I set out to take steps towards reaching this goal. I went to Trafalgar Square to ask strangers to give me a hug with the tantalising invitation ‘Hug me, I’m HIV positive.’

I truly believe what a real grass-roots activist once told me – “Stigma kills, not the virus.” The late Elizabeth Taylor said, “It’s bad enough people are dying of AIDS, but nobody should die of ignorance.”

That’s why I’m positive about being positive. Maybe the global route won’t reach enough people so we need to make this battle against stigma and ignorance personal. So let’s tackle it, one person at a time, and leave a very nasty taste in stigma’s mouth by spreading knowledge, experience, hope and hugs.

This year has been all about supporting people to access the facts about HIV, to break the myths, and on Saturday December 2nd my Forest Gate Pride Committee took part in a community initiative to do just that and also to share a few hugs.

 

Isaac Samuels, member of Think Local Act Personal’s National Co-production Advisory Group (NCAG)

International Volunteer Day (IVD) 2017

Volunteering comes in many different forms; it might involve spending a few hours per week helping out at your local hospital or a charity shop, or a much bigger time commitment that becomes virtually a full-time job.

On International Volunteer Day I applaud everyone who takes the time and trouble to contribute their bit to society and would encourage others to do the same.

For very personal reasons, I fall into the latter category, devoting between three and four days per week in my various roles with Carers UK, Carers Trust in my home county of Cambridgeshire and as a member of the C4CC Co-production Team, spreading the word about the vital importance of our ‘Three Cs’ in involving people and their community in their own care.

I’m a campaigning volunteer, raising awareness about plight of the hidden army of unpaid carers, who like me devoted a very large part of their life to looking after the one they loved.

For me, it was my wife Sheila, who I looked after, for much of the time without seeking support, for over 12 years until she died 20 months ago.

Her passing has made me even more determined to spread the word about the support that is out there and also to campaign for more, recently marking Carers Rights Day by visiting parliament to both lobby and inform MPs.

For me volunteering has become a drug, as I know many people out there are struggling to cope with the pressures of caring to the detriment of their own health and welfare, many in near poverty and unable to cope.

If I can help to raise this awareness more openly, then I believe my contribution will have helped to make a difference.

After all, I have acquired specialist knowledge from over 28 years of caring, a lived experience that gives me an insight into many of the pitfalls a carer is likely to encounter on their caring journey.

There is much fantastic help available out there, but in my volunteering role along with others of the same thinking, we have helped to shape and streamline many of the available services so they are more user-friendly and cost effective.

This means the much-reduced council budgets have a better chance of fulfilling the needs of those with long-term conditions and their carers.

I am now 73, retirement for me is not an option I wish to consider, neither do I want to just wander around trying to find something to occupy the time aimlessly. I want our great country to be the very best at what we are good at…leading by example!

I don’t criticise anyone who chooses to spend their time that way, but my view is that if you have a wealth of skills and experience that can be used to the benefit of others then it is a tremendously rewarding experience and one I would thoroughly recommend.

I have made so many new friends and acquaintances through my work with three fantastic organisations and I hope to play my part for many years to come because despite the Care Act of 2014 enshrining much needed rights into law there is still much to be done.

 

Richard Cross, C4CC Co-production Team member

Reflections of a long time carer

I have been a carer for nearly 20 years, with firstly my mother, and then my husband developing Alzheimer’s and becoming dependent on me for their support.

My husband is now in the advanced stages of this cruel disease and I am drawing on all my experience as a former nurse in the NHS to fill in the gaps in his care.

Many people are in the same situation as me, but do not recognise themselves as carers, but when an individual becomes increasingly dependent in relation to their physical or mental health needs, there is a gradual realisation that the caring responsibilities are taking over more and more of their lives and the relationship changes.

This is perhaps when they first see themselves as carers and it can be daunting.

You are worrying about them, how best to support them and how you are going to cope.

It is a new world for most of us and vital that the carer and the cared for are supported at that stage and that there are easy pathways to relevant information.

One of my roles in life is to volunteer for the local Alzheimer’s Society and I chair an Experts by Experience peer support group at our local Caring Café.

The carers that attend our support group share their experiences of what information, help and support that they have received have been most beneficial. Also, what has been lacking or has not worked for them.

As a member of the C4CC Co-production Team, it has become clear to me that applying the principles of ‘Three Cs’ of the coalition; Better conversations – Stronger communities – Partners in co-production; provides people with long term conditions and their carers with that vital support in testing times.

Here are my thoughts, based on experiences over these many years.

Conversations

One of the recurring stories that arises is that when a carer and cared for person initially attend their GP surgery with short term memory problems, there may be a real need for signposting to appropriate support even before a firm diagnosis is made.

The experiences of carers are variable and some carers feel really let down at this initial stage, not knowing where to turn next.

Where a GP is able to signpost sensitively and is much more proactive and helpful the support is really beneficial.

But, information alone is not necessarily enough. I well remember a new member of our carers support group coming into a meeting with a large bag of leaflets and booklets. She sat down and said ‘Can anyone help me sort all this out?

The local authority had provided her with copious information appropriate for a carer looking after someone with dementia, but no other support in sorting and selecting the information to support her particular requirements.

This is where our group and others like it can add value through our conversations.

Growing strong communities

It has been said by a member of our carers’ group more than once that the experience has been ‘life changing’.

Quite often, carers come with trepidation into our group. They feel so vulnerable and at sea and don’t know what to expect.

The sharing of experiences; the informal advice and the emotional support which is sustainable over the long term, is invaluable and we all benefit.

Within the café there are also professionals to enlarge the conversations.

The Caring Café is supported by our local authority because of the excellent level of services it provides in a community setting.

Under the Care Act 2014, local authorities must offer or commission services that aim to prevent or delay the need for support and to promote wellbeing both for people needing support and their carers, and I know we are able to do this in the Caring Café as do similar groups all over the country.

Co-production

One of my best experiences of the right conversations and co-production at the right time was when I requested a home assessment for my husband, who was becoming increasingly frail at the time and in danger of repeat falls.

The GP referred us to the local CCG Response and Rehabilitation Team.

The professional team that assessed my husband over several weeks treated us as equal partners during the process, were willing to experiment with equipment and handling issues and set in course a mutually agreed programme of self-funded support.

This was co-production at the right time.

Now, my husband is receiving continuing care, co-production has been limited to the relationship developed between the individual carer support worker and myself, the package of care being put in place through a provider agency.

The standard of care delivered is very much dependent on my personal monitoring of the carer support workers.

With my health service background I can fill the gaps in care, but others are not so lucky, which is why C4CC has a vital role to play in its promotion of the co-designing and co-delivery of services and rigorous monitoring of commissioned services for people with long-term conditions, particularly where they lack capacity.

 

Margaret Dangoor, C4CC Co-production Team member

Twitter: @mpdrichmond

C4CC welcomes new standards to be adopted for letters to outpatients

Hospital consultants will be encouraged to write clear, easy to understand and jargon-free letters directly to people and copied to their GPs, instead of the other way around, under proposals recently approved in principle by the Academy of Medical Royal Colleges (AoMRC) and championed by the Coalition for Collaborative Care (C4CC).

The AoMRC has been tasked with leading a programme of change to encourage and support clinicians across all disciplines to adopt this as good clinical practice and to incorporate it formally within the training curricula of both undergraduate and postgraduate doctors.

C4CC has long campaigned for this vital change, replacing the current practice of consultants writing to an outpatient’s GP, and referring to patients in the third person.

C4CC co-chair Nigel Mathers, the Honorary Secretary of the RCGP, said the plans had gained widespread support from doctors, including the Royal College of General Practitioners, and patient organisations.

“This will be a personal letter to you, with your GP copied in, who will also be supplied with more detailed technical information, which can also be discussed with you,” he said.

“It’s a big cultural change and naturally will take time to become standard practice because it requires training and a different way of thinking for all doctors, but the new policy framework is an important step in the right direction.”

Katie Clarke-Day, who works with NHS England and C4CC on projects to improve the lives of people, like her, with multiple long term conditions, said she had long advocated for more personalised communication between doctors and their patients.

“It may seem like a small change, but it is hugely important, particularly for people with long term conditions,” she said.

“It’s about relationship building with the people who are keeping you alive and trust is really important.

“From the start, from the very first letter that you receive, you should have all the information that you need, in plain English, so you can take ownership of your treatment and get the appropriate support,”

Making sure the right information is always included in outpatient letters is the first step.

New guidelines to help professionals do just that were published by the Professional Record Standards Body (PRSB) last summer.

Their new guidelines encourage professionals to produce consistently high quality letters.

“Many more people are treated in outpatient clinics including people with complex health and care needs so it is really important that outpatient letters are clearly written and contain the right information for hospital staff, GPs and teams looking after people in the community,” said Lorraine Foley, CEO of the PRSB.

“Our standards help professionals share information. We are right behind the proposals to ensure that letters to patients are written in plain English so that everyone has a good understanding of a person’s health needs and most importantly that patients can take greater control of their care.”

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How Self Care Changed My Life

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The reality of living, for those like me with multiple long term conditions, is that self care is both inevitable and a vital part of our treatment. We don’t live in hospitals and we don’t have a home full of medical staff. We spend the vast majority of the time caring for ourselves, often with only the support of family and friends. The changes I saw when I took responsibility for my ‘self care’ for me were life changing.

This isn’t to say we are sent out into the world without information and support. I am so grateful for the expertise and experience of the NHS team that support me. My time with these key people in my life is limited, sometimes far less than I want or need. For me this lack of contact led to a need for quality time with ‘my experts’.  That’s the first step to good self care for me, making the most out of the limited contact we have with health professionals who have full knowledge of our conditions and combining that with my own health goals and lifestyle expectations. For me, being proactive and assertive in those conversations gives me vital knowledge to have confidence in managing my illnesses. Not everyone wants to have these conversations, I need clinicians to understand that that’s a big part of what I need from a consultation to allow me to get by successfully until I see them again, a prescription simply isn’t enough.

I’ve used these interactions to better manage a life threatening illness in the last year. Firstly I had to become really aware of my illness and how it affects me, what triggers changes in it and how it responds to treatments.

I then took this knowledge of my own illness, my body and my skills to the doctors who care for me. For example, one of the main reasons I end up in A&E has been an issue with my heart rate. So I made sure that in one of my consultations with the cardiologist we talked about what he regarded to be a dangerous rate for me (as opposed to paramedics and A&E doctors that don’t know me) and what action I can take to monitor my situation and when to act and call 999.

That conversation, alongside other similar conversations about managing my symptoms, including staying hydrated and managing nausea, gave me all the knowledge and more importantly for me, the confidence to manage my symptoms at home more effectively. On a day- to-day basis my illness now impacts my life much less than it used to and even the extra time it takes each day to monitor my symptoms and do as I need to rather than as I want to is worth it! I have reduced my emergency admissions to hospital from 10 in one year to 0 in the last year! That’s 10 less 999 calls, 10 less ambulances, 120 hours less spent in A&E and 30 nights a year that I’m not spending in hospital each year. That’s nothing compared to the hours I have back in my life to use for living, not just surviving. I’m not cured, my condition is not notably better, I just manage it well!

 

Katie Clarke-Day, C4CC Co-production Team member

Twitter: @notjustaheadach

National network calls for more ‘asset-based areas’ to transform communities and services

You can focus on what’s wrong with someone in terms of their health and social care but what if you focus on what’s ‘right’? A national network of community practitioners calls for all public sector professionals and commissioners to work with people’s ‘assets’ rather than their ‘deficits’ if they are to build strong communities and sustainable public services, according to a briefing published today.

The briefing gives a compelling case for why asset-based approaches should be the basis of all local area planning and service delivery and follows on from the launch of Engaging and Empowering communities in 2016, which gained support from national leaders, including NHS England CE Simon Stevens.

The Asset–Based Area briefing was compiled by Alex Fox, CE Shared Lives Plus and Chair of the Building Community Capacity network, hosted by Think Local Act Personal (TLAP), which is leading the way.

In it, Fox and the network offer practical guidance with a description of the ten features of an ‘asset-based area’ that nurtures people’s wellbeing, resilience and influence so that they become equal partners, not passive recipients to the organisations and people who respond to their needs. They also suggest a number of planning and support models that use asset-based thinking and have been operating for years in different areas and with differing degrees of take up and success -models ranging from Homeshare schemes, dementia friendly communities, Time-banking and others.

Alex Fox OBE, Chief Executive of Shared Lives Plus, said:

“During this period where there’s huge pressure on money available to local areas it is more important than ever that every area can find value and build the full range of resources and assets that could be available to it. This would require leaders and decision makers to see their role as working with, not for, people. Working in co-production with people with health and care needs is at the heart of all asset-based methods”.

Clenton Farquharson MBE, Chair of Think Local Act Personal board, said:

“I have nearly 15 years’ experience of arranging my own support and employ a Personal Assistant who enables me to live a full and active life including spending time with family and running a Disabled People’s User Led organisation called Community Navigator Service CIC, besides other interests and ambitions. I don’t want to be part of the lucky few, I want more people to be supported and facilitated to live the type of life I enjoy”

Angela Boyle, Head of Programmes, Coalition for Collaborative Care, said:

“There is clear evidence that building asset-based areas works. By bringing together people and organisations we can nurture stronger, healthier communities. This paper supports community leaders with practical tools and models to effectively utilise the powerful assets that already exist in their communities for improved health and wellbeing”

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C4CC: HIV in Hackney

Kristi Adams, C4CC’s Senior Co-production Advisor, recently facilitated the second of two workshops, commissioned by the Homerton University Hospital NHS Trust, with the goal of improving the care and support available to people living with or at risk of HIV.

The first workshop back in March attracted more than 80 people, with a mix of people using services in Hackney, healthcare professionals, commissioners and other key stakeholders providing their input and expertise.

Participants explored what good would look like for people, from prevention and testing through to palliative care.  The group identified the good work already happening and how this could be built on to become even better.

The second workshop drew on a smaller group and was focused on the actions and key points raised from the earlier session, identifying what needed to change and how, and how gaps could be filled.

Below, you will hear from Kristi and the people involved in the workshops about why this work is important and how they will help to improve services for people living with or at risk of HIV.

Kristi Adams – Senior Co-Production Advisor, Coalition for Collaborative Care

I was delighted when C4CC was approached by the Homerton University Hospital Trust in Hackney to co-design and facilitate two workshops, with the aim of improving the quality of service it provides to people living with or at risk of HIV.

The hospital is already recognised for its innovative approach. It employs peer navigators who are themselves affected by HIV, to work alongside people in the co-production of their care and provide personalised support during, what can be for some people, a very stressful time.

There was an understanding by the hospital at senior level that more could be done to improve the patient experience through better co-ordination and collaboration with a whole range of stakeholders in Hackney, such as GPs, commissioners and the local authority. It was clear from the outset there was a collective willingness to engage and embrace new ideas and approaches.

This focus on better conversations, the use of community assets and co-production is the key message that C4CC is promoting with its national partners and we will continue to do our very best to provide support to any organisation that wishes to foster the same ethos.

I am confident that what will happen as a result of the workshops and other connections that were made will be to the benefit of the people of Hackney and we have pledged to continue our work with the Homerton as the programme develops.

Professor Jane Anderson –  Director for Centre for study of HIV and Sexual Health Homerton University Hospital NHS Trust

With more people living with HIV than ever before and at a time when the NHS is under enormous financial pressure, the need for all of us to collaborate across the whole health economy has never been greater.

At the Homerton, like other front-line hospitals, we are well aware of the scale of the challenge and we are committed to ensuring best outcomes for people by exploring new ideas and new ways of working.

It was in that context that we worked with C4CC to organise and facilitate two workshops to allow us to identify both areas where things were going well and also to look at where we need to make improvements for people with HIV in the local area.

It was crucial to ensure that everyone involved right across the care pathway could take part and give their point of view. That meant ensuring we included service users, specialist clinicians, commissioners, GPs, elected political representation and our public health team for Hackney.

The task was made easier because C4CC is an NHS England-based organisation, which gave the workshops credibility within the health system.

At the second event, we could build on the themes and outputs of the earlier workshop held in March, using the momentum that had been generated.

I believe that the relationships and potential working partnerships generated through this process will support the development of a ‘whole system’ approach to HIV prevention, treatment and care in our locality, that is based around the needs, perspectives and aspirations of those affected by HIV.

I am confident we have begun a process that will put the building blocks in place to ensure the best outcomes for those affected by HIV within our local area.

Janine McGregor-Read – Peer Navigator at Homerton Hospital For Positively UK

 As a long-term service user, diagnosed with HIV 25 years ago, I have been able to witness at first hand the vast improvements in the standard of treatment provided by the NHS.

In my job role at the Homerton as a peer navigator, I have been able to draw on my own experiences and others to help shape the service that is provided to people, and I believe what is happening here is above and beyond what is generally available.

But we must never be complacent, particularly with the challenges of a client base that is getting older, many with mental health issues and other complex problems. Faced with this challenge, I detect a real desire to find a way to make the system deliver the best that is available, whatever the funding.

The C4CC-facilitated workshops were able to connect people, to flesh out duplications and gaps in service so we can be as effective and tight as possible, giving priority to the areas that are most important to patients.

People have to trust the service they access and for that to happen we have to understand their needs, their concerns and provide the wrap around support to allow them to prosper.

At the second workshop the service user was put very firmly at the centre of the conversations as we look to develop a better working model. Every individual is different so the system has to be flexible to meet their needs rather than relying on the traditional linear model.

Meeting and sharing views and perspectives with people from outside the immediate hospital environment was an invaluable experience and I am hoping that our collective input will have a positive benefit for the residents of Hackney in the future.

Iain Reeves: Consultant specialist at Homerton Hospital

At the Homerton we pride ourselves on the quality of care that we provide for people living with HIV; most treatments are successful and we have good clinical outcomes. But there is a recognition that we need to move beyond that because we have many people with a complex range of physical and mental health issues, in the main, but not exclusively, because of ageing.

Initially, those problems may have arisen because of the impact of a positive diagnoses and the stigma and discrimination this can unfortunately attract.

For this and a host of other reasons, I believe it is vital that we place people at the very centre of a network of care services to provide the support and help they need.

I attended both workshops and found them very rewarding in terms of getting the right people into a room and stimulating the right conversations. For me, the most valuable connections were made with representatives of primary care and a really positive outcome is that we are now looking at new ways of delivering care and different ways to involve people living with HIV at GP and consultant level.

If you would like to know more about C4CC’s work with Homerton University Hospital NHS Trust, please contact Kristi Adams on kristi.adams@nhs.net

 

Achieving Personalisation for People Affected by Dementia

With the NHS Five-Year Forward View and the Care Act driving the personalisation agenda into the mainstream, there is an increased need to focus on how to achieve this meaningfully and consistently in the context of budget cuts and other pressures.

Whilst many recognise the benefits of personalisation, there is still work to be done in making it real for people and we hope that this tool can help provide consistency in the approach used by professionals involved in care and support planning for people affected by dementia.

Progress front coverThis tool can be used by anyone organising individual support packages. It highlights good practice and shows areas where possible improvements are needed, while acknowledging that people and organisations won’t all be starting from the same place.

By adopting a ‘no blame-no excuse’ approach, the tool can be an unthreatening way for staff and teams to explore their current practice against practical benchmarks and find ways to improve their performance incrementally.

People with dementia consistently tell us that they want choice and control over decisions about them, for services to be designed around them and to feel valued as part of a community. We know that person-centred conversations lead to better individual outcomes and we hope the practicability of this tool can lead to transformational change across the dementia landscape.

Personalisation is at the heart of what Alzheimer’s Society do and within my team in particular, we are working to achieve this for people affected by dementia.  We are committed to modeling our own practice around the approaches detailed here. Through our partnerships with local authorities, CCGs and other organisations we will seek to ensure all people affected by dementia get the best care and support available to deliver what is most important to them.