And so the end is nigh

My Florence Nightingale Scholarship is coming to an end and it has been a fabulous opportunity to self-reflect, learn and make decisions.

My original project was to look at new roles to provide support to people with dementia and their carers to remain at home for as long as possible and prevent unnecessary Hospital admissions. I have been successful in achieving these and our fabulous staff commenced these roles in October and have been outstanding with their commitment and energy. They are not alone, supported by  a strong and dedicated community nursing workforce.

For me- the learning has been immense. Whilst I have achieved the remit of my project this is just the beginning. It might be the end of the FN Scholarship but it’s just the beginning if our journey in improving the care we provide to dementia patents and their families. My Dad always says the “World is your Lobster” which says a lot about his sense of humour- well the World is definitely our Lobster.

When one reflects and considers your own journey you have to appreciate that you cannot achieve anything alone. Some of the best leaders are those who are able to show humility and accept help from others. Whilst I do believe that one person can change the World, together is stronger, kinder and much more fun.

And what of my personal journey. It’s been very hard balancing the challenges of work with my own personal experiences of being a carer, mum and wife with more emotional and challenging personal issues arising on an almost weekly basis. But it’s also been extremely worthwhile. Being in Australia heightened my learning as well as being the first real break I’ve had for 5 years and it was an absolute pleasure to meet colleagues from across the globe and be challenged both professionally and personally. Back to the cold and wet and even snow of England but back home to those who love me and need me and to a wonderful population who deserve to be fought for, held in high esteem and ultimately to teach us the value of caring.

Thank you Florence Nightingale Foundation  

Australia here I come ....but what a dilemma

The last few weeks have flown by. I now have 4 days until I fly to Australia to speak at a conference, visit numerous Alzheimer’s projects and the KOORI project. Nearly all of what I’ve achieved has been via twitter and I am a convert -finding new friends and enthusiastic contacts that actively campaign for the rights of others. I’ve been planning this for months, keeping in touch with contacts and working hard to identify places to go. I haven’t actually written my talk yet, although I have sent in the presentation. Typical me….I tend to talk from the heart not from cards.

Living with dementia is a journey full of hills and dips. Living with dementia can mean caring for, giving or supporting and in my eyes I have the easiest journey. My father’s path is the uphill one and we simply bring some reprieve to them and enable him to take a different turning every now and then which provides him with an easier path or something lovely to look at.

We’ve been living with my mums illness for 7 years plus now and watching her slowly and gradually fade away from us. What a shock then two weeks ago to get the news that my mother in law, the stalwart one, the one who would see her great grandchildren born and go to my children’s weddings be diagnosed with terminal cancer with around 6 months to live, A woman who has never smoked in her life and lived in some of the cleanest air the UK has ca lung, bone secondaries and is living in excruciating pain. My role as nurse and conduit between services has extended dramatically and I am now a relative experiencing the frustrations and poorer aspects of Hospital care. But I have also found a real nurse champion, a nurse who has enabled my confidence in her and the care she can deliver, to enable me to confidently go to Australia next week without fear. I have been struggling with whether to go or not and the reason I can , is because of a nurse. It’s a nurse who has met our family’s needs. This is why I am “such a nurse” because we can provide the holistic care, kindness, care and compassion necessary to ease peoples pain. Whilst this isn’t always the case, we are fortunate  and once again it’s a community nurse that’s done this. It was a D/N who noticed my mothers change in cognition and a specialist community nurse who is supporting us now.     

Mt family is close and I feel a different type of stress and strain leaving my immediate family behind for 3 weeks in such a time of anxiety. Watching my hubby go through this pain and knowing I won’t be around is extremely difficult to take. Now I have Anne though, we all feel better with her daily calls or emails and ability to speak to me like a human being- honest, open and gentle. This is what caring all is about for me. I don’t want to be fobbed off, told we,ll know more after…..just spell it out so that we as a family can gather our thoughts make decisions,making sure we don’t have any regrets.

So I am going to Australia but will be SKYPING and speaking to my family regularly.  I will do a daily tweet, but my desire to look, learn and improve my own skills has been dampened by the thought of not being here when family need me, the constant what if……. and the guilt that one feels when you leave people behind who need you. I am blessed with a family who genuinely love me without condition, I was brought up by two people like that, acquired more when I got married and have a husband who does the same. I am a very lucky woman. I will make sure my busy schedule provides me with learning and love that I can bring back to support the people I care for- not only my patients but also my family.

Nearly time for Aussie

It is now just over 4 weeks until I fly to Australia on my Florence Nightingale study tour to see how they support people with dementia and their loved ones. Typical of me, I have filled nearly every day with visits, talks etc. and I'm very much looking forward to it. Im also getting used to getting up at 5am to SKYPE call.

The interesting thing for me as I progress on my leadership journey is how much like a roller coaster it is. I started off knowing what I thought I wanted and what I wanted to achieve. Now I feel as if I just keep changing my mind. I seem to bounce from one idea to the next, one career aspiration to another. And there's something quite nice about that. Life isn't always something you can plan for or organise in the same way you can a kitchen cabinet. It throws up all sorts of blips, challenges and opportunities and some of that depends on your willingness to "grab and go" when opportunities arise.

They say perseverance pays off and in my case it certainly has. At last Hounslow have been in touch regarding a dementia steering group. They've already spent their allocated funding in a mental health trust. Not the right thing in my view as I see dementia more of a chronic condition, a journey of living with and embracing the opportunity to stay well, stay at home and enjoy your life rather than a mental illness. Regardless of this, we have a moral duty and responsibility to work together to improve the lives of those we care for. Now my Trust is actively engaged,I hope that we can do this. Boundaries become barriers when they should simply be seen as a line on a map. We must work together and the steering group is striving to do this.

My project in Richmond is growing and developing. Our two new roles start on October 7th and their enthusiasm and commitment for the role is infectious. It's so great to see and hear their commitment and ideas.

I have also secured some really good enthusiasm and drive from Bucks University who want to engage with us on evaluating the project so that we ensure that learning is shared and cascaded. I want the roles to be so important that they are protected and fully funded in the future as well as being taken up by our other partners. In this way we will create a system wide approach to supporting those living with dementia rather than it being siloed into one patch only.

So as we near World Alzheimer’s week starting tomorrow, like pain, dementia is what the person with it or affected by it says it is. No two stories are the same and experiences vary. But each one must be respected, heard and understood. Every voice has a right to be heard, even if it can be difficult to hear.

 

New service for dementia starts - August 15

How can we support and improve the lives of those affected by dementia within my workplace?  I had the joy of sitting with our steering group last week- a small group of four committed and dynamic staff working on implementing our new roles, secured through the Florence Nightingale work I,m leading, in HRCH. It was a joy because they care as much as I do that we have a responsibility and are ideally placed to “do something”.

Our postholders ,like me, want to change the World but my goodness the possibilities are endless and we are very excited about them. The intention is to make such a success of these new roles that we can promote them and secure them across the Trust so that all our patients benefit and not just those in one Borough. We know that the numbers are rising and one of our individual clinicians did an experiential audit to identify that at least a third of her caseload were affected by dementia. We know that by 2015 there will be one million people with dementia, two thirds of these will be women and the proportion of people with dementia doubles for every five year age group.

In a climate where the health and social care budgets are being stripped down and criteria changed in an attempt to manage this, the role of community services like mine are essential in preventing Hospital admissions, self-management and improving quality of life.

Two people in one side of the Borough can’t meet all these needs, but they can certainly make a start, improve the access to and signposting available to those living with/affected by dementia and work together with social care, voluntary and independent sector to improve how we all work together.

Our Trust has ambitions to be 100% dementia friendly and from September I will be re launching our commitment to this. Everyone is affected by dementia- not just adults services, but children’s services too. Actually I don’t think I know anyone who hasn’t been touched in some way by this condition.

We now have our new roles in post, planned sessions not only from the health CQUIN but also from our volunteer dementia friend’s champions with the Alzheimer’s Society. We will be measuring aspects of care that no one else does, because rather than metrics based on activity and data they will be based on “how it feels”. We want to understand the gaps more so that we can shape the future in partnership with commissioners and colleagues. We will be skimming the service of what it’s really like and probably opening a can of worms, but without opening the can you can’t release the richness inside or find a lid to keep it safe.

The project is progressing and it is exciting. Let’s keep watching together.

Tears , tantrum and time - a carers perspective

Three days with mum, the last culminating in a meeting with the social worker to review her package of care. Being a distant carer is frustrating, isolating but  important. Being a voice for those lacking strength and system knowledge, exhausted by the effort of loving without praise, rest or reciprocal feedback is an essential role.

What I see as a distant relative is different from the lives my parents are actually living. I want to help, to ease the pain and burden and wonder daily at how this 78 year old man manages when it takes three of us to transfer from bed to chair. The regular falls and the increasing anxiety that people with dementia often experience results in a fear of falling. I wonder how he manages and keeps well enough to continue in his role of husband, friend and carer.  But then I  also see a woman who is terrified, leaning on the arm and chest of the man who's loved her all his life, who shared pencils with her at school, sheltered her from the rain and travelled the World together.  The effort of caring and the times that are worst are from Dads perspective ,the occasions where she falls or he cant get to her in time to maintain her dignity. But he doesn’t want to relinquish his role in caring as these  times are also now the only occasions that he can hold her in her arms and actually have physical contact.

Now sleeping in a Hospital bed at night, in a Buxton Chair during the day, - the sitting together --mum protected by his love and engulfed by his arms have gone and the only time left for closeness is in caring duties. No wonder that, despite our concerns for his health, he doesn't want to even discuss nursing homes. The house can be dirty and so my frequent visits are now engaged in cleaning as well as caring, but it's worth it to see them at home together, where they belong. As long as he wants to do this, we have to honour and enable that, despite the fears that he isn't really, coping. But we also have to shout for their rights and abdicate for them as it can feel as if society really doesn't see, hear or care about the thousands of people barely coping at home. As long as it's cost effective and minimal they can walk out the door and tick a box! In an unsustainable economy we simply have to think and behave differently if we are to protect those people who made us and society what we are today.

My personal experience and fortunate upbringing has enabled me to progress all aspects of my role but in particular my passion for dementia with vigour and enthusiasm. I believe that experience makes us better at understanding the reality of caring and in working in true partnership, as equals with those who are receiving services will result in a better service.

My personal experience has shaped my belief system and commitment to patients and I draw on this every day as I strive to lead a quality and patient focussed organisation.  My next BLOG will describe the FN project and progress with it in more detail and I hope show how it is making a positive difference to those in receipt of care.

A rose in the morning surrounded by the sheen and sparkle of dew. As the sun peeps out and smiles, the petals turn bright and vibrant. How difficult then when the sun stops shining and the sparkle becomes like a cataract- discoloured and stubborn.  Underneath and within is the young blossom still, bringing joy and colour to the World around it .Don't pull the petals off, watching them fall to the ground where they wither and die or become embedded in the soles of shoes. Rather keep a gentle watch, take joy in the changes in light and shade, the ability to still sparkle at times and the vulnerability of time.

Challenge is good - real engagement is essential.

It's good to be challenged. I read a BLOG by Kate Swaffer today about involving people living with dementia in the ever increasing and expanding world of dementia action alliances. And it's true - we are notoriously bad at doing this. Sometime it’s because we don’t know where to start, sometimes we are concerned that they won't cope, sometimes we want to start our work first and get a baseline to discuss with patients, before expanding it. All of these are wrong.

Early on in my career and leadership journey, I remember saying that last line and the patient with whom I was working asked why. I think of him every time we discuss or do anything to do with involving patients and carers and hope one day to be that person who does engage from the very beginning- together. The latest NHS word is co-production. Well if that's the words, then let's do it properly.

I also met a great Doctor last week, we discovered a shared passion for dementia. I said "I wasn't an expert, but had a real passion". He replied there are no experts, just people, who care and with a passion. So what is an expert- someone with influence and knowledge to be placed in a position of power, an ability to change or is it those who we call “experts by experience”.

I've always told my children we are all good at something, to be an expert, but it might take time to find that skill. For some it's academic, for others creativity and for some it's simply the person they are.

In dementia we lose the person we once were or knew. We struggle to find them again, to catch glimpses of that expert within, but they are new experts now. A different expert and we need to learn about them and with them and by default ourselves in that journey.

I have been progressing my scholarship this weekend, with reflective time to gather my thoughts, decide my path and take stock of what I'm trying to deliver and have come up with the following

- I'm not going to give up on the second Borough. The need is greater and I have an ethical and moral duty, to continue to fight for something more.

- In Richmond adverts are out and we are recruiting next week for the first roles of their type, working with patients and families to focus on self-management, prevention and keeping people at home. The roles aren't exactly what I wanted but compromise is good and we are on the first chapter of what could be an exciting story.

My scholarship has widened my mind and thoughts. Twitter is my new best friend and has opened the door to fabulous contacts and ideas. I don't respond to many tweets because of my role and job, but sometimes I secretly weep in sympathy and love. One day I will engage more and see if my own experiences can provide challenge as others have done for me. My scholarship journey continues with a trip to Australia- watch this space - the excitement and opportunity is truly captivating. Keep reading to see what I’m doing--- it's changing daily as are my aspirations and ambition.

And what about those who ignited this passion and resilience in me, those who shaped and moulded me into the person I am. My parents are in a bad place. There’s so little help and so little ability to make their lives better. My pledge this week is a daily phone call. I can hear the desperation and relief when I call my father. Distance doesn’t enable me to do as much as I’d like, but what I can do is always be there, visit often, call a lot, listen and hear. I can intervene with the system as necessary (because I can and I know it) and pray that the good days make up for the worst.

The real experts in this are my parents, the ones who can shape the future , teach us humility, kindness, resilience and how to deal with pain.

Dont read this- Im off again about having a voice and politics- personal views only. Florence Nightingale scholar

A few years ago we had all heard of The Big Society!

It all seems quiet now but we live in a World where people caring for others and being willing to "step up" is essential to the future. A few months ago I spent a fantastic day at The Houses of Parliament with a local MP and had the pleasure of meeting Women's Aid and Girl Guides advocates who were talking about "see me, hear me, believe me". Whilst this relates to women's issues the same powerful meaning can be applied to anyone who's voice is not always heard and also, in many cases, to their carers.

It appears to be increasingly hard for people to have their voices heard or indeed needs met. Whilst the NHS is a political football tossed between the political parties as a re- election tool, we can lose sight of the people we are trying so hard to serve. Whilst MPs talk about the managers and fat cats, I struggle to find any- as they have been decimated and reduced down to a minimum. What the public rarely see is that most of them are also clinicians trying hard to provide high quality services with ever reducing finances. There are plenty of fat cats around but I suspect you won't see them in hard pressed providers and no one looks anywhere else!  We in provider land (the Trusts from which/or in which you receive services)  can flex and innovate, and are willing to do so. But when the services we work with have ever strapped finances and are changing their criteria for access to accommodate the changing financial climate, we will never win the battle without change. I’m thinking particularly of social services who are experiencing unprecedented cuts to finances. We in the NHS have to think differently but so does everyone else and like it or not, society has no choice but to step in and up if we are to manage our ageing population safely and with kindness.

I think like this as we prepare to visit my mother again next week. Three weeks of carers and already no-one turned up today and last week they came on the wrong day. Twice in three weeks might not sound too bad, but when you can't get her out of bed without help and depend on the support to keep her skin clean and dry, no care means her having no option but to be in bed all day. Don’t forget that social services care is not free. We need to find and encourage the right people to do these important but unsung roles. When the Government talk about more Doctors and nurses, I wonder if like the miracle workers of old, they know how to turn pebbles into people, because they just aren’t out there. With a minimum of four years training for most qualifications we need to think differently and innovatively now. The people who largely enable people to remain at home and are carrying out things like washing, dressing, transport aren’t NHS at all but are run by Social services and its these services that appear to be harder than ever to get. We must think “together” – them and us simply won’t do it. And yet providers where many of the answers lie, feel as if they don’t have a voice with the three or four different commissioning/government bodies put there to decide who gets what.

 My father struggles on, washing, cleaning, dressing, feeding and the cycle continues endlessly and at 79 I don’t think he has a voice. He’s from that generation that believes that if you’re entitled to it, someone will tell you, is reverent to those in authority and doesn’t like to ask for help. He doesn’t get out and can’t get out due to his 24 hour a day, 365 days a year responsibility – neither do they have a large circle of friends or support structure. I am his voice and I fight for their requirements. Without my voice and that of my Sisters I cant imagine my mum would still be in her own home living the best life possible . Those with a voice, even if it's not their own, are more likely to get care. My worries are for those without this. Not all people can get out of the house to attend the services that exist and once they are housebound, it can feel as if life revolves around routine and chores rather than snippets of laughter and joy.

My scholarship has been a tonic for me - it's given me energy and experience to understand that there are many possibilities and such a lot of good is already going on. When I went to the Alzheimer’s Society I was really, impressed to see  all the good things they're doing. But it's only good if people know about it. Despite knowing that fantastic initiatives are going on I grow increasingly concerned about the gaps, the people with no voices whilst also being relieved that there are so many people about there who really do appear to care. Perhaps together we can make a real difference and give people a voice.

Over the next few weeks I'm working on different areas around diversity and even if it's not dementia, I think this informal knowledge will heighten my ability to lead the agenda.

So only a few weeks after the election, suddenly the NHS is much quieter, MPs have a  pay rise and the “good news is no news” continues with news of poorly performing Trusts, potential strikes and Trusts in deficit. I say again- there isn’t a day goes by that I don’t feel humbled and honoured to be a nurse when I see my staff- from all disciplines - in action- rising above adversity to do the best they can for their patients. The NHS is to be cherished – and those of us in it continue to fly the banner for free health care for all – together we can do it!!