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Taking Care Further – Hospice at Home
So much has happened in the last week that I would like to blog about but one of the side effects of grief that I hadn’t fully appreciated is my complete inability to concentrate on anything for more than two minutes! Given this current affliction, that I’m confident I will recover from in time (probably about the same time I start sleeping through the night rather than waking up and listening for noises) I am not going to blog about Dad’s death just yet, not in detail. I’m also not going to blog about how I’m left feeling, not yet, but I promise I will in time.
The one thing I didn’t want to wait too long to blog about was the absolutely amazing and life changing support that we received as a family from the Hospice at Home service provided by Rowcroft, our local hospice. I’m going to try to explain a little about Hospice at Home, how we came to meet these phenomenal people, and the difference it made (all in spurts of two minutes concentration). When Dad received his terminal diagnosis I suspected that we’d be involved with Rowcroft in some way, but never could I have predicted quite what a difference it would make.
Dad had a two week period as an inpatient at Rowcroft towards the end of his life, this happened once he actively decided he wanted no further treatment from the medical team at the local hospital. Before that he had met a number of social workers from the hospice and the one that made a lasting impression on Mum was Lynne (she never stops talking about how lovely she is) and he had also been receiving support from a specialist nurse, Tracy, who did a great job of coordinating the different aspects of Dad’s care, of coming out to the home to visit my folks, and of generally managing to focus on what Dad wanted and how we could all work together to achieve that. It was Tracy who arranged his inpatient stay and it was following her visit to see Dad at home a couple weeks later that the Hospice at Home service arrived in our lives. We’ve a lot to thank her for.
The Hospice at Home service does it exactly what it says on the tin. It is available to patients in the last two weeks of their lives, and it provides them with invaluable support to enable them to remain in their own home. It was only after Dad left the hospice that he decided he wanted to die at home. When we had discussed it previously he wasn’t too keen, I think both him and Mum (and I would have been too if I was asked) were a little scared about how it would work, and I know that Dad told me he was worried about having bad memories associated with our family home which has always been such a happy place. I can reassure you that our family home has only been enriched by the memories we have formed in the last two weeks, and the people who we have met and who became a part of our family for that short period; I believe that Dad had a fantastic death, there were ups and downs and some scary moments, but Dad wouldn’t have had it any other way. Dad lived his death much the same as he lived his life, and his illness – with a stubborn determination, a sense of humour and a positive mental attitude – all in his own way. The Hospice at Home service* enabled that to happen.
Dad died on a Thursday morning and we had someone from Hospice at Home with us 24-7 that week. We nearly bit the Sister’s hand off when she offered us someone to do a nightshift that Saturday. Dad had been getting worse since the previous weekend and we were all exhausted from lack of sleep, we had brought a baby monitor which meant we didn’t need to be sat in with Dad all the time, but by this point it was beginning to be a mixed blessing because it meant we were constantly up in the night when Dad was coughing or dreaming! The first night Mandy stayed, she came with her own hot water bottle and blanket, she walked into our home having no real idea of what she’d find and she just fitted in. She was professional and polite but had no airs or graces. She was amazing with Dad (who was still awake some of the time then), patient and interested with Mum and myself, and friendly with the dog and cat. That night I was on my best behaviour and went to bed intending to keep out of her way….but it didn’t last, I was awake twice in the night and popped in to check Dad and Mandy were ok and I can’t tell you how ok it felt to be wearing my PJs in front of someone I’d met less than 12hours earlier!
That was a theme that continued really, both me in my PJs and the comfort and ease at having these people in our family home. Mandy covered the first night, Mum and I managed Sunday day time on our own but were relieved when Tracie arrived for the second night. At this stage Dad was declining quite a lot and it was a big relief to goto bed knowing there was someone with him – nights and weekends have always been the hardest and it made such a difference to know that there was someone there looking out for Dad and to provide support for us if we needed it.
From Monday we were lucky enough to get 24 hour care and support. Monday morning saw Jane come, Monday afternoon-evening was Elaine (that was the Spotify night but that deserves a post in its own right another time), Monday night was Lisa. Tuesday morning Jane was back and she persuaded me to goto work for my leaving do (with Mum’s encouragement too) as it was what Dad would have wanted (he’d told me as much the week before) – at this stage I was fairly convinced that Dad wouldn’t die if I was with him so I completely expected he would have died by the time I got home (I was out for 90 mins – another blog post required for my amazing send off – another time) but he hadn’t and that felt like a huge weight had lifted.
Tuesday afternoon-evening saw Chris come into our home, by this stage I was seriously frazzled and couldn’t believe Dad was still with us – it was my cousin’s birthday the next day (Dad’s favourite niece – not that he ever had favourite’s you understand) and I was desperate for him not to die on her birthday; Chris was very patient, almost zen like and she simply pointed out that Dad would go when he was ready. I felt ridiculously guilty at the time, thought she must have thought I was some awful daughter wishing him away, but it really wasn’t that. Dad surprised us all anyhow because he lived past her birthday. Tuesday night saw Mandy back again after a few days off, Wednesday morning was Karen’s turn, Wednesday afternoon-evening Chris was back again and Wednesday night Mandy completed her hattrick. Dad died at the end of Mandy’s shift, she was due to leave at 7am and he died just before with Mandy and (blonde) Sister Sue with us. Lovely, lovely Elaine was due to be back with Dad on Thursday morning, she had shared our playlist hijinks and I think she had seen our little family at it’s most mad, and she made him respectable for the undertakers and kept us all company.
In addition to the people I’ve mentioned above we also got to meet the two Sister Sues (one blonde and one brunette), Sister Anne and the legendary Sister Clare whose reputation preceded her. Clare’s staff raved about her, I’d done some internet digging and knew that Clare was special, and most importantly Clare was on the poster at the bus stop outside Torbay Hospital – Mum have regularly seen that poster but never had we appreciated what a difference the service would make. When Clare visited she told us a little of the history and that she had been involved with Hospice at Home since it’s inception, we have a lot to thank her for. Night sister’s have drivers and the whole service is coordinated by Teresa during the day and I’m sure there are lots of bits of it that we don’t understand but we are grateful for none the less.
This post doesn’t even begin to tell the full story, it doesn’t really speak about what these brilliant people did, they gave him medication, kept him comfortable, changed his position, washed him, joked with him, spoke to him, calmed him, held his hand….the list goes on. What they also did was support his family members and friends and share the experience with us, by being part of it but also by sharing themselves. We learnt about their families and friends, previous experience, reasons for doing the job they all do, bits about their childhood and upbringing – it could easily have felt like an onslaught of strangers in and out of our home, but it didn’t to me, these were people who were sharing in our journey and sharing themselves with us. Really, really special.
I’ve raved about the support we received to a few people and most people respond along the lines of ‘Glad to hear it, but wouldn’t you expect that from a hospice’? Quite simply no, there is a world of difference between what you hope for or what you expect and then what you experience. So often since Dad has been ill we have had our hopes and expectations dashed – usually by a poorly under-resourced system rather than any individual – but no, I couldn’t have hoped or believed that the support we received would have been as good as it was. Rowcroft’s support, and particularly for us the Hospice at Home support, really did take care further. I really couldn’t have wished for a better death for my Dad, or better support for us as a family.
We’ve requested donations in lieu of flowers at his funeral for the Hospice at Home appeal, and watch this space I can imagine there will be a few more attempts to raise funds or awareness over the coming months.
*I’ll write a blog post another time with other people who played a pivotal role such as the Community Equipment Service, the District Nurses and Dad’s amazing GP (and his equally lovely secretary) – it really was a team effort.
JANUARY 2013 Update: I’m delighted to share that the retiring collection at Dad’s funeral raised £911.03 for the Hospice at Home Appeal.
I’m also honoured that Rowcroft Hospice have featured an extract from this post in their newsletter to help raise awareness of the fantastic work that they do.
If you would like to know more about the hospice, their amazing services, or would like to make a donation yourself please visit their website by clicking here.
When systems fail Pt2
Last week I wrote a blog post outlining a situation I find myself in and some of my thoughts and reflections about it. I’m not going to attempt to rewrite it here, suffice to say that the précis is my neighbour is (I believe) unwell and not receiving the support he requires. I was blown away by the responses I received, the blog comments, the tweets and the DMs from inquisitive and caring people. In a nutshell people seemed ok with me writing about it, there was lots of mixed reactions about where the fault or responsibility lie, a lot of compassion and a few people advising me on my next steps (most of which suggested I get more involved/take more action).
So here we are, five days later, and I am wondering whether I can cope with much more. Without going into great detail, a few things have happened:
- My neighbour’s behaviour has continued to be erratic and unpredictable. Lucky for all of us (and I mean that genuinely) that is completely legal and we enjoy enough civil liberty that it seems to be you can behave in any way you like (including 24-7 LOUD music, shouting, swearing, ranting, smashing things up and general noise) within your own property. In fact it appears that you can do anything you like within your own four walls. Which on a good day I think is totally appropriate, but I guess it only works if you have enough consideration/awareness for those living next door.
- There have also been incidents of questionable behaviour (I guess it depends how tolerant you are to some extent) outside our homes, which luckily for us, means that there are some grounds for action. The action so far has been the Police checking things are ok, and when they’ve felt they weren’t on one occasion (as I understand – I don’t have the details obviously) they took my neighbour to the police station. I don’t have the detail so I don’t know why or how long he stayed, but I do know that this should have been my first chance to get a full nights sleep for weeks – except other life events took over and I wasn’t at home anyway.
- Other neighbours have started getting involved and the Police visited me the other day thinking I’d reported something and I hadn’t it was another neighbour. In a way this actually made me feel really glad that I wasn’t the only one pro-actively seeking to address this issue and concerned for his welfare.
- The Neighbourhood Policing Team have been out to visit the local area to discuss Anti-Social Behaviour. They asked a lot of questions and said what they could do about a few situations, or at least what there plan was, a lot depends on what people would be prepared to make statements about to them and whether they would be prepared to attend court. Since I’ve opened my eyes wide and started really taking notice it seems that there are quite a few parallel situations in my immediate vicinity and I’m left with two options – do something or do nothing – at the moment I’m on the do something path.
- I have made a statement to the Police and agreed to make myself available to attend Court if it ever comes to that. When asked to make a statement, I wanted to get it out the way so the upshot was I missed some of the tennis to get it done, but I also saved a very friendly PC from at least one hour of ‘high visibility policing’ at the weekend! This left me feeling completely torn, as outlined in my last blog post I think this is a health not criminal matter, however there doesn’t appear to be any other way to get it addressed. In the end I reconciled myself with the fact that I just shared what I had seen (and in some instances heard), I don’t decide what happens with that info and I was quite honest – so when asked whether ‘I am distressed by the events’ was a fair reflection, I said no! This what more than an issue of semantics as well, I didn’t feel distressed (suggestion being it was me who was the victim – see below), I do find the situation completely distressing. I’m not sure that the subtlety was understood but I was not, and am not, interested in blaming anyone, I am very prepared to share the situation and as far as I can the impact.
- Since that point I have been looking at my situation with clearer eyes and to be honest I am starting to feel a bit unsafe and vulnerable. I have even considered whether I am a victim of my neighbour’s behaviour. I’m sure that was never the intention, and it’s something I’ve been aware of and tried to fight myself, but I am starting to feel a bit exhausted by it all and scared to know what I’ll find when I get home late of an evening. That said I’m not a victim just yet. For now at least.
- I had a conversation from a family friend who had a key and was trying to check on my neighbour when I got home from work on Monday. After he was unsuccessful he came in for a five minute chat. He was genuinely concerned about my neighbour’s health and welfare, he had known him since school and periodically came to check on him, but he’d heard he’d been having dealings with the Police, and wanted to check he was ok. My neighbour wasn’t interested in answering the door, if indeed he was in the house at the time. This guy changed my perception quite a lot, if I believe all he had to say (and I have no reason not to), then the message was that my neighbour’s parents and family members were at their wits end, they don’t know how to help him, they have all spent years trying to support him and feel like they can’t do any more. They had reached the conclusion that the best thing that could happen was that he could be detained at her majesty’s pleasure because they felt then he would have a period of time in one place (without drink or drugs) where people would be able to support him to address his health. Their suggestion was that if the Police were involved perhaps he would be put away.
This final point made me feel completely conflicted, I cannot begin to imagine how hard it must be to watch someone you love in this situation, I’m just a neighbour and I’m struggling, this guy is their son, brother and friend. And, to reiterate the point in my last post, he is a nice lad, he is just unwell. I am slowly beginning to understand how hard that must be for people, and the completely pervasive impact it has on your own life.
That said, I can’t help but think criminalising him (even if it is the quickest/easiest/only route to get him support) is not appropriate. Hence my earlier conflict about giving a Police statement. To be fair to the Police, I have heard at least five officers mention the Mental Capacity Act, and they are very considered in their approach. They are not taking this situation lightly. They are very much aware of my neighbour’s rights and the balance between what he is completely entitled to do in his own home, and when it is appropriate for them to take action.
The stage I’m at is that I am exhausted by it all (and maybe am just exhausted by life more generally, it’s been a fairly intense four weeks). I do feel like the Police are doing all they can, I don’t think that is necessarily the best way of dealing with things, but I’m at a loss for what else to do. I am getting fed up with trying to help, with being eyed with suspicion for sticking my oar in (possibly my own paranoia), with having to make a judgement call of what is irritating (but ‘normal for XX’ behaviour as I heard it referred to yesterday) and what is more severe.
I am also plain and simply knackered. I’m tired of feeling unsafe in my own home (which I think is where this is getting to) and I’m tired of not knowing what I’ll find when I get home. I’m also plain and simply tired because if you live next door to someone who plays non-stop LOUD radio between the hours of about 8pm-8am it is a challenge to get to sleep – and let me tell you last night’s Late Night Love call in was dire (even muffled through a brick wall).
As I sat writing this, at about 7.15am, I saw my neighbour wander off down the street. Dishevelled and disorientated would be a good word to describe him. I’ve no idea where he is off to, or what he will do, but I still remain with a deep pebble of unease within myself about the whole situation. I hope he keeps himself safe.
When systems fail
I live in a terraced house in a large market town in the sunny South West. I moved into my house about six years ago and my next door neighbour’s mental health has been fluctuating ever since (and actually I now understand since long before). I don’t feel at liberty to discuss his details, and I’ll not include any photos on this post, this story is an example, it is not a complaint about the actual situation. In terms of context he’s male, in his thirties, and a lovely lad – my Mum really likes him given a few conversations they’ve had over the back garden wall.
I came home from work last night early (about 5.30ish) and his house was completely open, door and all the windows (upstairs and downstairs), music was blaring and there was a small assortment of objects in the front garden (half a hoover, a yellow pages, some rocks, a butter knife, some torn up photos and a pink cuddly toy – that’s not a joke, it did look a bit like the contents of a Generation Game conveyor belt). My neighbour was nowhere to be seen. I had a chat with his neighbour on the other side and she explained that he hadn’t been well for the last few days (I’d not been at home for three nights), the Police had been out to visit a couple times, she had seen him walk off into the local estate about 25mins earlier.
While we were talking he came back, he was dressed in shorts, flip flops and a silk kimono dressing gown and was carrying a litre size glass tankard which he promptly informed us was full of Southern Comfort. Some small talk was had and we all went on with our lives.
Which meant for him he went inside and started smashing things up in his house. I know this because despite being an old terrace it sometimes feels like there are no walls, they certainly aren’t very well sound proofed. Concerned for his welfare I rang the Police Non-Emergency line (101) – I have no contact details for his GP or the Mental Health Crisis Team, so I really had no other option. Officers came out visited him and I got a call back to explain ‘he had a small cut on his finger but he was otherwise OK’. I explained that it was his mental not physical health I was concerned about, the call handler explained that the Police couldn’t help with mental health, but I was also told to call back if I had any further concerns.
Two hours later after the music was cranked up even further, the contents of a bedroom had been hurled out his first floor window and I was in the kitchen making my tea I saw him walking around the back of our houses and knocking bins over. This I decided meant it was worth another chat with the Police. After twenty minutes on hold, and one suggestion that I should call environmental health if it was a noise issue, and my persistence that this wasn’t about noise, they agreed to send someone out.
I went to Asda to get milk and was relieved to see a friendly policewoman when I got back who I first met a couple weeks ago when she became involved in this situation. I have complete confidence in her wish to do a good job, previously she had managed to convince my neighbour to go to hospital with her for medical attention. He hadn’t been at home by the time they got there and they were very concerned for his safety. They were also, I think it’s fair to say very frustrated, I’d go as far to say almost as frustrated as me. I have concerns that I’m wasting police time, after all this is not a crime, this is an unwell man who needs help. I also get hacked off with being told to speak to environmental health – while I am increasingly concerned about the impact this is having on my life and the life of our other neighbours and of course the value of my home, and any chance I have to sell it – I do not contact them for my own sake, I am concerned about his health. The police officers both reassured me I had done the right thing and I the only thing I should do differently is use the priority number if I’m concerned, don’t bother with 101 (if I had done that I guess they might have got there before he left but 20mins on hold and all that).
So here’s the real deal, as I understand it and the real point of this blog, to explain a ridiculously flawed system. The Crisis Team will only take a referral from his GP, the Police’s power is limited, as much as I’d like to think environmental health is the solution to this situation I don’t think monitoring noise levels will lead to anything but at best a short term solution. This is a young’ish man who is unwell. He sometimes seems to realise he is unwell, sometimes doesn’t. He has a long history with a number of services and seemingly very little social support. I’ve not seen his lodger in a couple weeks and suspect he has drawn a line and moved out. As I type this his music has stopped (having been on full since midnight to 7.30am) and things have gone silent, as much as I’d like to think that is a good sign I have a deep unease in my belly. I just hope he is ok.
If he isn’t, if he has harmed himself, or if he snaps and harms someone else, I will feel culpable in some small way. I feel complicit in this situation now, and I wouldn’t wish it for anyone.
I understand that the system is complicated, and I understand that resources are tight, and I understand that he probably thinks that he is OK, and I appreciate that he doesn’t accept the help he is offered and I suspect he isn’t taking his medication and I know he is drinking (which actually probably means the substance misuse service, if it still exists, should also feature in the tangled web)….but I also know that he is a good guy who is just a bit challenged with life at the mo and I don’t much like living in a society that stands back and lets that happen.
The system just seems to fail him. It also fails the people working in it. As a member of this community I am also starting to think that it is failing us. The absolute ridiculous thing about this system of course is that it isn’t one system, and therefore there isn’t even any one person to contact to try and address things.
It’s nearly half eight now and the school on our road is getting busy, it won’t be long until the kids and parents arrive, and inevitably stand and stare at the contents of the garden. I dread to think what the parents will say to the kids who ask the inevitable and obvious questions, my suspicion is that they’ll either ignore it and shuffle them past, or they’ll blame it on the ‘mad man who lives in that house’ (yes I’ve heard that said). I hope just one or two of those kids grow up to think differently about things, I hope they get jobs that are about helping people, and I hope if there are any future police officers or mental health workers or social workers in that bunch that the system is truly focused on the individual’s who needs help by then. That gives us about twenty years to fix it, I truly hope it is sorted by then!
Dark days of depression: not bad, mad, crazy or weak, just ill.
This weekend has seen me tweet twice about football, an almost unheard of situation previously. Today, Gary Speed, the Wales Football Manager died suddenly at his home from a suspected suicide, an absolutely tragic loss to his family, friends and of course to the football community.
Yesterday I heard about a tweet that Stan Collymore had sent, describing his experience of depression, so I tracked it down. You can read it here. It is a deeply honest reflection, written with graphic detail and an eloquence that grabbed me. He talks about the benefits he has found from running:
The running I find really has helped massively, as i’m sure you guys that suffer who exercise find, the tangible release of calm, and “being on top of things” powers your internal dynamo, and keeps the black dog from the door.
Before moving on to explain the feeling when depression takes over, describing his latest experience as:
Around 10 days ago however, I started to feel anxiety, which grew into irrational fear, which in turn turned into insomnia for 3 days (little sleep, and an incredibly active, negative mind), that in turn over last weekend (Swansea v Man United) into Hypersomnia, whereby my energy levels dipped to zero,and my sleep went from 8 to 18 hours overnight … So fit and healthy one day, mind, body and soul withering and dying the next. This to me is the most frightening of experiences, and one fellow suffers i’m sure will agree is the “thud” that sets the Depression rolling.
Stan describes further the impact of depression on him (seriously if you’re still reading just go read the whole thing – it is powerful) and talks about how to support someone:
I’m typing and my brain is full, cloudy and detached but I know I need to elaborate on what i’m going through because there are so many going through this that need to know it’s an illness, just an illness. Not bad, mad, crazy or weak, just ill, and that with this particular illness, for its sufferers, for family and friends who are there but feel they can’t help, you can!
Patience, time, kindness and support. That’s all we need. No “pull your socks up”, no “get out of bed you lazy git”, just acknowledge the feedback the sufferer gives, get them to go to the GP asap, and help them do the little things bit by bit.
That may seem simple but in my experience, and currently as we speak, having a bath, walking for 5 minutes in the fresh air, making a meal, all things that days before were the norm, seem alien, so friends and family can help, just by being non judgemental, and helping in the background to get the sufferer literally back on their feet.
It’s hard to know what to do when you’re confronted with someone who is depressed, it’s hard to know what to say or what to do, but as is so often the case in any of these situations, the reality seems to be that mostly what people require (or at least what Stan is advocating) is time, support, patience and kindness. No judgement, maybe an ear to listen, and a helping hand.
It’s also hard to live with someone who is depressed. To keep trying to get it right, to worry about getting things wrong, to start to feel responsible, to not be able to help, to feel part of the problem as well as potentially part of the solution. Of course the reality is that when someone is depressed they are ill, a myriad of situations and circumstances conspire to make someone ill, it is never the cause of one person, or one circumstance. That said I know how hard it is to remember that, when you’re faced with depression or living with someone in the throws of depression, it is hard to hold onto things you take for granted at other times. I consider myself lucky to have felt depressed, but never to have suffered from depression.
I am very aware of some of the trigger points for my own mental health, and try very hard to keep my life in balance, to force myself to regularly exercise, to have a good diet, and to not get too absorbed into any one area of my life (although work seems to be the constant thing I need to challenge on this regard). That said if I thought I was depressed, or those who were closest to me thought I was at any point, I’d want to be encouraged to seek help and see my GP. I think we still have a long way to go in breaking down stigma around mental health and well-being in the UK, and I know that seeking help can feel like a huge hurdle to jump.
When I read Stan’s post I thought about how I felt when I heard that my Dad’s cancer had returned – and how hard it is for people to know what to say in that situation, I wrote about it here. The reality is, I think we probably worry ourselves so much about saying the right thing, or not wanting to make it worse, that we can skirt around the issue. Acknowledgement, a listening ear, support and patience – that’s what helps, you don’t need to have the right words, or a solution up your sleeve, you have to care.
If you are concerned about someone then try to encourage them to see their GP, and also let them know they can always talk in confidence to the Samaritans on 08457 90 90 90 or email Jo@Samaritans.org. Stan finishes his tweet with:
I hope that if you are suffering, or know someone that does, that a little insight into someone elses experiences might resonate with one or two and give them the comfort of knowing that there are millions out there like us that deal with this reality in our lives.
Remember the statistic, 1 in 4 of us will experience mental ill health – that’s 25% of all of us, depression is an illness and one that can be treated with the right support. If you’re reading this and worried about yourself, or someone you know, remember you are not alone, seek help and things will improve.
Sources of support:
(cc) on flickr by Tommarsh – Black Dog of Depression, St Patrick’s Day Parade 2011, Dublin
Reflections on #NCASC – let’s start with people
For the last three days I’ve been in London for #NCASC – the National Children and Adult Services Conference. A considerable focus of the conference was #integratedcare and the need for #health and #socialcare systems to work closer together, set within the current economic situation and reduction of resources. I think its fair to say that at times at conference you’d have been forgiven for forgetting that what we are all really interested in is improving life for people who need to use health and social care services. I guess that understanding is absolutely implicit, and the challenges are great at the moment, so much so that it would be easy to reach a state of being overwhelmed with the magnitude of the challenge, and disillusioned with what can actually be done.
So, I’d like to share a good news story.
While I was going about life at conference, back in sunny Devon unbeknownst to me (because my Mum didn’t want to bother me when I was working), my Dad was getting increasingly breathless. For anyone reading this blog for the first time, my Dad has cholangiocarcinoma (bile duct cancer), and he has a terminal diagnosis. Just over a week ago we had an appointment with his consultant (you can read the post I wrote the day before we went) where he told us that one of his tumours had shrunk slightly (and the reaction). This is great news as we’d tried to prepare ourselves to hear that the cancer had spread to his lungs given his difficulties to breathe and recover from the slightest of physical activity. We were told that Dad was anaemic, and the relationship between tumours needing blood supplies and the tumour shrinking was gently explained. More blood tests were taken, the possibility of an endoscopy floated, iron tablets and vitamins promised once the results were available.
On Thursday Mum decided they could wait no longer, Dad didn’t want to hassle (neither of my parents ever do) but Mum balanced up the possibilities of Dad’s health deteriorating sharply over the weekend (anyone who has had to rely on our health or social care systems knows not to get ill at the weekend) and the need to just gently nudge the system. One phone call from Mum to the Oncology Dept revealed that they had the results and someone would phone back with them. Hours later a chance inquiry into Dad’s health by their GP when dealing with my 93yo Grandad led to him getting involved and prescribing iron tablets and following up with Oncology too. A day later Dad has a course of iron tablets and a blood transfusion booked for Tuesday because his haemoglobin levels were so low. I’m confident that we have that outcome for two reasons, because my Mum didn’t wait until things got worse and chose to take action herself (in spite of how uncomfortable that makes her feel) and because our GP knows enough about my family to ask about my Dad when dealing with my Grandad. I’d like to think that his information recording computer system is good enough that when he looks at my Grandad’s notes he is able to see that he lives with his 91yo wife next door to their daughter and son-in-law who provide them with care and support, one of whom also happens to be terminally ill. I know I’m pipe dreaming but you know what I mean.
So what has this got to do with NCASC?
Well, as I sit here musing on Saturday, the words that made the most impression on me were from people who I know and respect, all of whom focused on people as part of the solution. These were Councillor Sue Anderson from Birmingham City Council who addressed a session on Health and Well-being Boards #hwb and focused on the need to focus on good relationships rather than bureaucracy. She wasn’t suggesting that the systems and strategy are not important, she was however stressing the need to start with relationship building and trust.
Next up on my thought provoking list has to be Richard Jones. The Director from Lancashire CC and former ADASS President took the floor in the Think Local Act Personal session #TLAP on the final day and challenged #socialcare to focus, arguing that we were getting caught on second order conversations about #integration and #resources and forgetting the people at the centre. Making it Real the new publication from TLAP will prove useful for anyone working on #personalisation to judge their progress against the end results that citizens have identified they need. Sue Bott also talked a *lot* of sense in the TLAP session, with a humour and personality to her delivery that few before her in conference had managed – she even got a room full of conference weary delegates to raise a virtual toast to Making it Real!
My final sense talker has to be Peter Hay, the Director of Adult Services in Birmingham and this year’s ADASS President who took the floor a number of times at conference. He joined the panel in the final session that focused on #integratedcare and the work of the Future Forum and again brought the focus back to those who use #socialcare services, reiterating a challenge from Lord Crisp at the conference opening to build services around #life not around #care or #health.
Isn’t that all a bit naive and over simplistic?
I’d like to think not. We are without doubt in need of large scale system change, #Dilnot challenges us all to consider our own future and how we will provide for our old age or social care costs, whatever your view on the Health Bill the creation of Health and Well-being Boards present an opportunity, our demographics are changing, as is our technology, our family life and our expectations. None of this is new though, not really, the likes of @RichardatKF can tell you all you need to know. Surely, we have known for long enough what works and doesn’t work with regards to integration and we must know by now that people just want to feel well and live their lives as independently as possible. Maybe it’s just me but I’ve yet to meet someone who cares which budget their support comes out of, people just want to live their lives.
So what can we do?
This was my third time at NCASC and each year I leave exhausted with a lot more to think about (and a head full of more ideas) than when I arrived. I usually meet a few people in person that I’ve not met before, my favourites this year were @jaimeelewis @mroutled and @philblogs and I was also delighted to see far more real life networking inspired by twitter connections. [As an aside I do believe that the #socialcare sector is finally realising the potential of #socmed]. I’m sitting here believing that change can happen, we have clear evidence around these challenges, we have enough people with enough experience to move on some of this. Personally I believe that this requires commitment and leadership, from those at the top of government (I too struggle to see how bin collections are more important than social care) to match those from the sector who I’ve mentioned above. As much as I welcome any attempts to engage people on the future of care and support (6 weeks left to contribute) I do wonder whether what we really need is a commitment to action.
The one consistent in all of these discussions and system challenges is the person who is trying to live their life. Start with the person, they (and their carers or family members) are the lynchpins in all of these systems and services. Let’s start improving services now, we can’t afford to wait.
NB: Just a thought, #socialcare readers of this might be interested in an earlier post What is Service Design? – the comments and discussion especially may help unearth some thoughts for how we can move on such large scale system redesign, without forgetting the end user or person who uses them.
