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!!

 

Excited- new dementia role agreed

I was shocked to realise it's been a month since I wrote my BLOG. My life has rushed by, what with my son’s rugby, GCSE and A level prep for my kids and 14 hour work days. But for my Father life is slow, waiting for each day to end so that another can start. The times where my father, as a carer, can now see pleasure in my mum or can sit holding her hand, her head resting on his shoulder is fast diminishing and instead appears to revolve around washes, feeding and something few people are brave enough to discuss - incontinence. And yet the love and compassion he shows is awe inspiring.

I haven't visited for a while - I must put this tight because although a daily phone call can lift spirits imagine then the impact of time.

Some good news is that on one side of the patch my idea around specialists supporting generalists to keep people at home has been embraced and taken forward in partnership with the commissioners. We are in the final stages of designing two new roles working specifically within community nursing specialising in dementia. The first year will be developmental and provide us with the information and knowledge we need to consider the way forward as well as ascertain the real need. I am pleased that Richmond who have also embraced the dementia alliance agenda have decided that whilst the additional funding is labelled mental health- they have had the foresight to use this money in health. Dementia, whilst it could be argued is mental health, in my humble opinion fits better in health. The majority of people require help and support in the post diagnosis stage and not at the end stages where mental health behaviours and needs are prominent. If we get it right we can help prevent unnecessary admissions or urgent admissions. Where the funding sits is immaterial – it’s how we work together across health and social care to meet people’s needs that’s the point. By using it in health- we can ensure the majority of patients our community nurses are caring for- those people with co morbidities, ageing demographic and complex needs don’t have to wait until they require referrals into mental health services for their dementia before they get help. We can work with our mental health colleagues, voluntary and independent sector in partnership to ensure that the person remains at the centre. This could be very exciting and quite an innovative approach.

On the other side of my patch I continue to chase up the idea I gave. I don’t mind where it sits or who leads- but I do want to see it realized. There are so many people out there where just a little extra support would give them the confidence and support they need to keep going- enjoying the good times and coping easier with the bad.

The Florence Nightingale Scholarship has enabled me to use the prominence and reputation of the Trusts to contact and work with people I wouldn’t usually and I have discovered some excellent champions and passionate advocates along the way. Don’t think that I don’t give the same level of enthusiasm and energy to all my patients- because I do. This has however given me the opportunity to try and give back some innovation and leadership to the frontline clinical champions in an area they truly understand in the same way as the Dragon’s Den has done with our fantastic school nurses.  We simply cannot give in or accept the status quo – the people we serve, the people who have given us their lives and experience for so many years- deserve this emphasis and commitment and I for one will continue to fight their corner.

 

The Art of Caring- how does it feel?

People say that having been a patient makes you a better nurse. They say you can tell the difference between a midwife who has had a baby and those that haven't  ....the one who's had one doesn't say "this might hurt a bit".

As I get more older and more experienced witnessing and experiencing the other side of caring and being cared for, I try harder than ever to listen and hear my patients voices and for those that have no voice their carers.

Having experienced my mother going into Hospital for three weeks this month, I was saddened as well as relieved by the care she received. A mixture of emotions, but one things for sure since my days in an acute setting, things have certainly changed. Over the years I've done my best to avoid my mother having to undergo admissions , speaking to the ambulance service , making sure my mums advanced directive is prominent and striving to keep her at home with the man who loves her, cares for her and ultimately has sacrificed his own self for her.

Home just over a week, she's a changed woman and not for the better! My Dad was so pleased when they said she was coming home, I could hear the happiness in his voice and sitting here now holding her hand whilst I type and listening to her rumblings and gasps of confusion---- despite the negative changes ,this is where she belongs. As clinicians we can fall into the trap of thinking we know best and not seeing the whole person. I like to think and hope that being a guest in someone else's house negates this and that with the right care, home is  where people should be.

Mum now has carers 4 times a day, a DN for the grade 3 pressure ulcer acquired in Hospital and a Hospital bed. My back is aching getting her up and down and assisting her to walk with a simmer frame to the  Buxton Chair where she stays all day. She is I’m afraid nearly lost to us, being confused and anxious most of the time now. My father is now absolutely housebound too ....dependent on others to release him but at least he has accepted some help and recognises that he simply can't manage on his own.

Perhaps the nest way of describing the impact we have on others is to listen to those others and so here are snippets of my fathers words

- I use the time the sitters are here once a week to have a bath. I can spend a whole hour by myself, it's a great source of pleasure.

- See, you can tell the difference between the older ones and the young ones (carers). They all do the same, but the older more experienced ladies talk to her, they spend a while and they treat us with kindness. They know that there’s a real person hidden in the woman they see.

-the older ladies walk her to the bathroom when she's good and not wash her on the commode or on the bed. They know she can do it and she's so pleased.

- I know people think I'm obsessed about getting my paper everyday. It has become a lifeline to me to be able to do the crossword. It keeps my brain active and gives me something to look forward to everyday.

 So once again the importance of keeping the right people at home for as long as possible is the way forward. It's tough , it's tiring and at  times downright depressing, but it's also their right, their wishes and in a lot of cases their purpose. It should be easier to do this....... It's certainly cheaper for the system! As an election looms, as a family carer I'm fascinated to see how my Fathers payment for my mother has doubled overnight with absolutely no changes to their circumstances, making him reluctant to accept the help. It's a disgrace and a travesty when people who have had only one admission throughout their journey of co morbidities and ill health  struggle so much to receive care.

I am in a position to help this and use my scholarship to consider different and new ways to bridge the gap. My experience of my mothers care is that the amount of time you give doesn’t really matter- its what you do in that time that matters. Its how much of yourself you’re willing to give others that makes the difference between being visited and being cared for.

I,VE LOST HER

I.VE LOST HER

The last two weeks have been a personal journey of heartache and challenge. After 54 years of marriage my parents are spending their second ever occasion apart. My mother was admitted to hospital a week ago and I visited to support my father in the MDT meeting.
One day last week he said "I,ve lost her" and he didn't mean she was dying, but that the last element of recognition and "finding herself through the fog " had gone. This is the hardest of all. Is this the time to look at a nursing home?
Well no, we are looking at a package of care of home , day centre and him continuing to love and care for her. A few days without her was a relief, he could sleep at night, eat what and when he wanted and find himself too. But a week on, he is a lost soul and almost pacing without her here. He has become a full time carer and the man he was is ,I hope only temporarily ,gone- lost within this role which could go on for years. We try to encourage him to take the help and to find things of interest for himself, but this is easier said than done, when someone else has been your life for 63 years. What we can do is be here, listen and hear and relieve the pressure.

Looking at my parents existence as a FN Scholar reiterates for me the fact that behind every person with dementia is a real person- someone who has achieved things in their life , full of interest and dynamism . We may not see that very often or at all, but that is who they are and they deserve the dignity and respect of lifelong heroes. Because each and every one of them is a hero to someone.

I had a teleconference this week with one patch of my work around possible investments in dementia which I could embrace and lead as a FN Scholar. I hope that my drive and belief in self management and preventing unnecessary  admissions to Hospital will yield results. We discussed how to support people and their carers to remain at home, how to prepare yourself for three to six months ahead and what to do if the "what if" happens. People with learning disabilities have fantastic shared care plans ......we could adapt and enhance these for example.

It's interesting that whilst most people know about my mum, I lead and manage this project as I do every project and lead area I have. I'm as enthusiastic and committed to every element of my role as Director and vehemently believe that all of our services should strive to walk in the shoes of others and lead by example. And this is what  I see every day.

We will have two new projects or pieces of investment in dementia care soon and I am excited to see what they are, but we could do so much more to meet those unmet needs. This requires a partnership approach and I think we,re on the way to achieving this so I am excited. My scholarship has focussed on raising the profile of dementia, looking at new services and me taking on areas outside if my comfort zone. So far so good - I'm well on my way to achieving this.  And the contacts I've made via twitter have yielded exciting results. The first chapter of my personal journey has laid the foundations, now I need to start to design the building!

Get well mum - you,ll be home again soon

Leading change

It's been a busy month and one for reflection and learning. The recent course – Leading Change and Organizational Renewal programme – as part of the Florence Nightingale Course gave me the following insights on the congruence model

1-Great stuff is going on in the UK as well as abroad- we need to celebrate our own success

2- Good leadership feeds the soul

3- The importance of conversation and discourse

4- RCA - why we ask why- to find a solution

5- What fantastic colleagues are on the course. My fellow scholars are all different, from different backgrounds, each with a unique project and unique skills to bring? It truly was marvellous to be surrounded by people with ambitious intent and willingness to learn. The three days left me feeling reinvigorated and enthusiastic for change.

One of my esteemed colleagues challenged me about using the words  "those we serve". But I do believe I am working to improve the lives of those we serve in the NHS. The public pay our wages after all and everything we have and do is paid from you and I. Serving to me doesn't serve up images of hand maidens but a moral responsibility to walk in shoes of the others - always striving to imagine how we would feel in the same position. So on this occasion I won’t change my intent but welcomed the challenge.

There is no doubt in my mind that it's tough out there- I'm out there too, with all the financial constraints and constant pressures. But there are also opportunities and visionary ideas that can improve care and cost less.

I used one of the tools I learnt on the FN course to map out my idea for the bid for those affected by dementia so it wasn't just words. Of course and not unexpectedly, my initial bid needs more work and I hoped that but using a different methodology it would make more sense. Telling a story of how change can have a positive impact on the lives of others will I hope make more sense. This week, I shall work on mapping out the priority and quality of conversation - also learnt on the course and plan the next few months. I’m looking forward to hearing from commissioners if my use of root cause analysis might complement the mind mapping   and create a story they understand as well as the factual data and analysis required in order to fund.

 The OCR course was heavy but I felt enlightened and full of energy when I had to return to a hectic Friday and an equally hectic week last week. Somehow sharing others frustrations and exhaustion as well as their joys and inspiration fills me with hope. I know I'm always positive but I can fall equally hard too. Whilst it doesn't happen very often, I too, can feel low and despondent. At the moment I feel excited and energised about the possibilities I have not only for me, but also for my patients.

My challenge is how to use the conversations I want to have to not only recognise the triangles emerging but to emerge others into the vision I have. Recognising others behaviours and discourse can support meaningful conversations and enrol the team into the vision.

Dementia care - I wrote a bid

Building on my previous blog where  I spoke about my exuberant personality but also my lack of interest in taking the time to analyse and explore options and the financial impact of my vision , I acknowledged that I need to slow down and take the time to do the background and research. The energy I have when I feel strongly about something needs to be channelled into self-exploration of the things I don’t enjoy but need to embrace if I am to be successful. This includes data analysis and financial acumen. Most people will agree with a vision that is based on the greater good, but different personalities will rightly want to know the process, what, how, the what if as well as understand the risk of failure before buying into the vision. Having a vision is one thing but making it a reality in today's climate can't simply be borne from passion alone but from a realistic and effective long term business plan. So I shared with my vision with others and was able to secure support. Rather than simply talk, I then needed to channel some energy into developing a business case.

So last week I completed a business plan for a new year long exploratory project to look at what works well for people affected by dementia living at home but also what doesn't. Working together with local authority, voluntary agencies and health we want to learn about what is being used and meets the needs but more importantly what isn't working for people living at home. At the end we will use the learning from the project to help future commissioning intentions.

It all sound s simple doesn't it? Simple it isn’t as I will need to learn from others around data, analysis, merging and aligning those with what I know about how people feel and believe in order to end up with a result that clearly helps commissioners to plan ahead. This is a great start to achieving my vision. I can’t wait to share this project with our fantastic staff and draw on their expertise to make the vision a reality.

As far as my scholarship goes I have thrown myself into the opportunity and am really enjoying the renewed energy and vigour it's given me. As scholars we are encouraged to learn about ourselves and work on improving our leadership skills in order to improve services/lives for others. I've digested the learning opportunities and have made contact with various key contacts and stakeholders I think will support my own development. I'd love to do this by shadowing or spending time with people I not 

only feel an affinity to or admire, but also those that are experts at things that “don’t rock my boat” in order to learn. I have purposely looked at testing out my own unconscious bias.

Part of my journey is to admit, that whilst I come across as exuberant and happy, I can at times be quite unconfident and have a habit for apologising for things that aren't actually a problem. For example I always tell people I’m rubbish at maths and analysis whereas in fact, I know from a reliable source, I'm actually not that bad and probably quite good. Shock, horror I hear you cry. More of a shock to me I assure you that I might actually have acquired an analytical skill. I’m keen to look at myself, embrace and reflect upon constructive criticism and learn.

I'm very much looking forward to the challenges the programme will provide and have enjoyed researching options available to me. The suggestions are plentiful and all look useful but I can't help but reach wider and am drawing up a long list of things I think will benefit me and my project and ultimately the people I serve. In the next two weeks I’ll know of the project has been funded and then the real work starts. Managing this on top of my already complex and broad portfolio will be the greatest challenge of all