9,000 people died in Haiti’s last cholera outbreak. We must act fast in disaster-affected hotspots to help prevent history repeating itself
Six years ago, as the country attempted to rebuild following a massive earthquake, cholera began spreading in Haiti. And it didn’t stop.
Adults and children – many of whom contracted cholera by drinking untreated water from familiar rivers and streams – lay listless in hospitals packed to capacity with emergency cases. The death toll mounted. The months passed. The cases continued. Stories of pregnant women and tough little girls and boys struggling to survive became the norm and were well recorded by partners on the ground, who were bearing witness to what is now considered the worst cholera outbreak in recent history.
Related: Hurricane Matthew: preparations and aftermath – in pictures
Related: UN makes first public admission of blame for Haiti cholera outbreak
‘When small hospitals are threatened with closure, this passion translates into protest.’ Photograph: Rex Features
The message from the new NHS chief executive, Simon Stevens, that small hospitals have a big role to play, is important for local people who are passionate about theirs – and may be in the nick of time for some of them.
In practice, plans for the future of community hospitals vary considerably across the country, presenting a confusing picture for patients, staff and communities.
For instance, in Gloucestershire, there has been considerable investment in community hospital services and facilities, including the new hospital in Tewkesbury. In Oxfordshire, Bicester community hospital is opening this summer after two decades of public campaigning. By contrast, in Somerset, there are proposals for closing services in community hospitals, and just last week there was an announcement that Ashby hospital in Leicestershire will close.
Poltair hospital in Cornwall no longer has inpatient beds, while a “pause” on proposals to withdraw beds was successfully negotiated by the community in Swanage, Dorset and in Ashburton, Devon. Too many community hospitals have been losing their beds and services over the past few years.
Community hospitals have needed advice and a voice, and that’s what the Community Hospitals Association (CHA) tries to provide. We know that local people are passionate about their local services, and see them as a vital community asset.
They are often closely involved with their service, such as through volunteering and donations, in a way that they are less so with the bigger hospitals. The financial support through a hospital’s League of Friends can be considerable, funding buildings and equipment.
Local people witness the benefit of the service through their own experience or those of family and friends, and often contrast the very personal care in a small hospital with the care in larger acute hospitals. When small hospitals are threatened with closure, this passion translates into protest marches of thousands of local people, as there were recently in Millom in Cumbria, and in packed public meetings, such as in Clevedon, North Somerset.
The local community in Rye, East Sussex decided that they would take this into their own hands. They felt so strongly about safeguarding their service that they bought the hospital and land, extended it and have been managing it successfully for over 15 years. Their view was that it really mattered to local people, and that they would look after the service. Other communities have followed suit, such as in Odiham, Hampshire and Wells, Norfolk.
What makes the difference is the strong tradition of care in local community hospitals over 150 years, and the access to health and care services they provide in more remote and rural areas. The whole community benefits from services such as clinic appointments, treatment for minor injuries, physiotherapy and x-ray. Inpatient beds are predominantly used to support older people who need rehabilitation and support before going home, which is organised by local teams of staff including GPs, social workers, nurses and therapists.
It is this sensitive and appropriate local service that is so appreciated by patients and families. Patients who need palliative and end-of-life care can also be offered a local service close to their home and family. A number of hospitals carry out operations, and others have maternity units and dementia care centres. New clinical and technological developments mean that services such as kidney dialysis, ultrasound and MRI scanning can be offered in small hospitals.
A number of hospitals incorporate GP surgeries, social services and complementary therapies. The variation and diversity of service is often a response to local need, showing how far they have developed from the original cottage hospital concept. This range of service is achieved by working in partnership with the larger, more specialist hospitals and many other providers of health and social care.
When making the case for small hospitals, patients and their families often talk about the access to services in rural areas, the continuity of care by local GPs and staff, and the familiarity of the service. It is less daunting to go to your local hospital than to travel to a large district general hospital, and more manageable in terms of transport and parking. These are important considerations for frail older people and young families alike.
The community hospital network has been gearing up, and Simon Stevens’s announcement has given a real boost to those who work in small hospitals. They know from their patients that their service is appreciated and is effective.
We at the CHA know that communities are engaged and enlivened by community hospital care. We know the 300 community hospitals across the country provide a different kind of care to the highly centralised care in acute hospitals. We can feel the NHS shifting in our direction, and since the announcement I have had a number of unexpectedly positive calls from commissioners. Not enough account has been taken of the community hospital sector until now. I believe, and hope, that is now changing.
‘When small hospitals are threatened with closure, this passion translates into protest.’ Photograph: Rex Features
The message from the new NHS chief executive, Simon Stevens, that small hospitals have a big role to play, is important for local people who are passionate about theirs – and may be in the nick of time for some of them.
In practice, plans for the future of community hospitals vary considerably across the country, presenting a confusing picture for patients, staff and communities.
For instance, in Gloucestershire, there has been considerable investment in community hospital services and facilities, including the new hospital in Tewkesbury. In Oxfordshire, Bicester community hospital is opening this summer after two decades of public campaigning. By contrast, in Somerset, there are proposals for closing services in community hospitals, and just last week there was an announcement that Ashby hospital in Leicestershire will close.
Poltair hospital in Cornwall no longer has inpatient beds, while a “pause” on proposals to withdraw beds was successfully negotiated by the community in Swanage, Dorset and in Ashburton, Devon. Too many community hospitals have been losing their beds and services over the past few years.
Community hospitals have needed advice and a voice, and that’s what the Community Hospitals Association (CHA) tries to provide. We know that local people are passionate about their local services, and see them as a vital community asset.
They are often closely involved with their service, such as through volunteering and donations, in a way that they are less so with the bigger hospitals. The financial support through a hospital’s League of Friends can be considerable, funding buildings and equipment.
Local people witness the benefit of the service through their own experience or those of family and friends, and often contrast the very personal care in a small hospital with the care in larger acute hospitals. When small hospitals are threatened with closure, this passion translates into protest marches of thousands of local people, as there were recently in Millom in Cumbria, and in packed public meetings, such as in Clevedon, North Somerset.
The local community in Rye, East Sussex decided that they would take this into their own hands. They felt so strongly about safeguarding their service that they bought the hospital and land, extended it and have been managing it successfully for over 15 years. Their view was that it really mattered to local people, and that they would look after the service. Other communities have followed suit, such as in Odiham, Hampshire and Wells, Norfolk.
What makes the difference is the strong tradition of care in local community hospitals over 150 years, and the access to health and care services they provide in more remote and rural areas. The whole community benefits from services such as clinic appointments, treatment for minor injuries, physiotherapy and x-ray. Inpatient beds are predominantly used to support older people who need rehabilitation and support before going home, which is organised by local teams of staff including GPs, social workers, nurses and therapists.
It is this sensitive and appropriate local service that is so appreciated by patients and families. Patients who need palliative and end-of-life care can also be offered a local service close to their home and family. A number of hospitals carry out operations, and others have maternity units and dementia care centres. New clinical and technological developments mean that services such as kidney dialysis, ultrasound and MRI scanning can be offered in small hospitals.
A number of hospitals incorporate GP surgeries, social services and complementary therapies. The variation and diversity of service is often a response to local need, showing how far they have developed from the original cottage hospital concept. This range of service is achieved by working in partnership with the larger, more specialist hospitals and many other providers of health and social care.
When making the case for small hospitals, patients and their families often talk about the access to services in rural areas, the continuity of care by local GPs and staff, and the familiarity of the service. It is less daunting to go to your local hospital than to travel to a large district general hospital, and more manageable in terms of transport and parking. These are important considerations for frail older people and young families alike.
The community hospital network has been gearing up, and Simon Stevens’s announcement has given a real boost to those who work in small hospitals. They know from their patients that their service is appreciated and is effective.
We at the CHA know that communities are engaged and enlivened by community hospital care. We know the 300 community hospitals across the country provide a different kind of care to the highly centralised care in acute hospitals. We can feel the NHS shifting in our direction, and since the announcement I have had a number of unexpectedly positive calls from commissioners. Not enough account has been taken of the community hospital sector until now. I believe, and hope, that is now changing.
Today I had a tonic-clonic seizure, the textbook hey-look-at-me-I’m-epileptic kind of seizure, with convulsions, teeth-gnashing, groaning – all the big boys!
It started, as it always does, with the rising feeling – a sickness and despair coming from my toes, like the feeling of nightmares – crawling all up my body and paralysing me so that I couldn’t call for help. Then the dread closed in all around me and everything went fuzzy and unreal.
The seizure’s never the worst bit, though. The worst bit’s when I come to and I see the faces of the people I love. It must be pretty horrific for them to see me all twisted and spitting like that. After every seizure my body mends me, but the guilt is always the last thing to heal.
Soon I felt weightless and kind of euphoric, like I was really stoned. Then the tiredness came. Seriously, nothing can lift the exhaustion once it’s there. It makes my bones feel like they’re too heavy for my body.
Usually after a big seizure I need to sleep all day, but today was different. Today Matt made me get up and go into the sitting room of the house we share in London, where he placed me in front of his photography lights. I sat there, too tired to speak, and he took this photo.
I’m exhausted and the left side of my face tingles where I burst some superficial blood vessels under the skin, but I feel kind of hopeful, now. I’m thinking this could be the start of something.
30 August 2012
I’m fucking scared. I’ve had so many tonic-clonic seizures in the past two weeks – like, ten or more; sometimes twice a day. They come in clusters and this is the worst cluster I’ve had in a very long time.
It probably goes without saying that I can’t work. Occasionally I do a bit of modelling – it’s a hobby I really love and I try to do it whenever I can. But right now I can’t even think about it. My speech is slurred and I’m so tired I can barely move; with every shoot I miss, my confidence takes a beating.
Maybe it’s just the exhaustion talking here, but I really feel like I can’t cope any more. The seizures are now so frequent they’ve left no space for me. What’s the point of being here? What’s the point of taking my epilepsy medication?
Even as I write these words I know that any second the switch could flick in my retarded brain and the epilepsy could take away my dignity and threaten my life and frighten the people I love. And the guilt. It just gets worse and worse. I’m so very, very sorry. Talk about a clusterfuck. Just before Matt took this photo, he asked me to think about how I was feeling, and uncontrollably, I began to cry. I haven’t told anyone yet, because I feel so ashamed of myself, but for the past few days I’ve been having suicidal thoughts.
13 September 2012
I’m out of the other side of the tonic-clonic cluster now, thank goodness, and I managed to get through it without confessing the extent of my depression to Matt. But the epilepsy’s still getting me down in lots of little ways. You see, this condition isn’t just about writhing on the floor in response to flashing lights (contrary to popular belief, only a small percentage of sufferers have this type of photosensitive epilepsy).
There are other kinds of seizure, like the one Matt caught me having in this photo. I just zoned out and ‘disappeared’ for a moment, hence my highly attractive, saggy-jawed zombie face. Sexy, right? Little seizures like this happen pretty often, and for those few seconds I’m not thinking anything, not a sausage. I only know I’ve had one when I miss a juicy bit of gossip in a conversation, or if I’m welcomed back to planet Earth by a fellow human saying my name. In a way this photo is funny. Now I finally see why my friends and family have called me Space Cadet and Dolly Daydream for so long. But in a way it intensifies my sadness. The tonics didn’t start until I was about 19 but I’ve been having these zombie seizures all my life. Why didn’t the doctors recognise them as epilepsy? Looking into these vacant, goggle eyes, I wonder how different things would be now if I’d been diagnosed when I was a child.
9 November 2012
Shortly before Matt took this photo, we’d had a huge argument; that’s why I look so exhausted. It was just petty, domestic stuff, blown out of hand. We’d been packing to leave London for his Nan’s 80th birthday party when we started needling at each other, and then, before long – BOOM – we were at each other’s throats.
Anyway, it was all too much. I couldn’t take it on top of everything else. I was at breaking point. So, mid-argument, I told him my secret that I wanted to die, and watched the wind get knocked from his chest.
Instantly I felt an overwhelming urge to leave, to run away. I was so ashamed. But then he held me, and the relief washed over me in waves. I felt safe. I’m so, so glad I told someone.
I have another secret that I’ll never tell him; I’ve stopped taking my epilepsy medication. It’s so stupid, I know, but I can’t help it. I don’t know why I don’t want to take it. I guess I’m just sick of it making me feel shitty, and sick of being controlled by it. No one knows this and no one can, only me.
25 November 2012
It all came out during my appointment with my epilepsy nurse the other day, when I confessed that I hadn’t been taking my tablets. I hadn’t planned to tell her but when she asked me if I had been taking my medication, I realised she just knew. Matt had come with me for moral support, and he was shocked to say the least.
After the appointment in Southampton (the town where I grew up) I was going spend a few days there with my parents while Matt went back to London. I got a taxi with him to the railway station and we were silent all the way, then he had to run for the train so we didn’t kiss goodbye or anything. All he had the chance to say was this one little exasperated sentence: ‘Your epilepsy’s got worse since you’ve been with me.’ I just stood there watching the train move into the distance.
Mum and Dad thought I should move back in with them so they could look after me; and to be honest, those few days with them were so cosy that I started to think they might be right. They were so supportive! But when I came back to London Matt was saying that we’d make it work, somehow. My parents want me to move back.
Matt wants me to stay. I’m sat in the middle of them like a freaking lemon. Matt took this photo today. I look so torn in it. I just don’t know what to do. Right now I feel like I want to run away and that I don’t want anyone trying to control me. Maybe I’d feel better if I started taking my tablets again?
3 January 2013
I’ve just got back from my first holiday abroad in ages. I went skiing in France with Matt, his mum and her husband for a Christmas break. Overall I had a marvelous time but there were some bad days. The real bummer about epilepsy is that it’s triggered by intense emotions. Like one day I got over-excited and had a seizure on the slopes. I remember very little of it but I know that I was rescued and sled down to safety by Matt and his family. I had to rest the whole of the next day. Dealing with the frustration of inactivity is a big part of learning to cope with epilepsy. Sometimes you want to go outside and climb a mountain or go on an all-day bender, but you’ve got to learn when to reel it in.
I’m back on the tablets now and my seizure activity and mood have calmed, although it took a few weeks to readjust to the meds – they seem to make me worse before they make me better. I’ve got into a good routine and haven’t missed a single tablet, I don’t think… I just can’t stand the exhaustion they bring.
Before Matt came home and took this picture, I’d sneaked on a bit of make-up. When you’re a bit special like me, you don’t get to feel like a bombshell very often, and I wanted at least one photo in the series where I didn’t look completely rough. Unfortunately, being a bit special means you often forget to do things, like take off your boyfriend’s scruffy jumper for said bombshell photo.
7 January 2013
Today was a really good day, mainly because I went to the gym. It might sound silly, but when you’re taking each day as it comes, even the tiniest of achievements can make you soar. Right now I’m tired, but extremely proud.
At the gym I did an exercise class and managed to keep up with the group for most of it. You feel kind of daft doing the moves, but then, everyone else looks pretty lame in those classes, don’t they? It was just loads of fun. I did zone out and get a bit wobbly at one point, so much so that the instructor asked if I was OK and suggested I had a time-out. But my competitive nature forced me to stay on until the end of the lesson.
I slept most of the afternoon, but got up for a photo when Matt got home. His face always lights up when he finds me in a good mood. It’s weird. Tomorrow could be entirely different, but I have days like this when I feel like I can take on the world…
3 March 2013
Sheesh! Epilepsy messes you around. Just when you think things are looking up, your body deals you another blow. I’ve been on my period for a couple of weeks now, and my epilepsy’s got worse again, which makes me think it might be linked to my menstrual cycle, somehow.
Apart from the big tonic-clonics and the zombie, zoning-out seizures, I also get these mini fits where I tightly clasp my hands together, my upper body fidgets, and my arms twitch and rock. Sometimes my head will fall to the left. It only lasts a few seconds.
When we were children my sister used to helpfully and rather endearingly inform my parents that I’d gone to ‘the bad place’ when I was having one, and the name stuck. They really aren’t too bad at all. They’re not dangerous like the full blown tonic-clonics, but now they’re becoming much more frequent and it’s starting to worry me. They’re exhausting me.
Right now I feel like this project is all too much. I’m finding it very difficult to write because I feel so lethargic. And because my emotions impact on my epilepsy, I’m now getting this sick feeling every time I try to describe how I feel. Like the illness has hollowed me out.
I’m in the bad place in this photo. I’d never seen myself having this type of seizure before, and it’s sort of thrilling to see it captured. But it’s eerie, too – coming face to face with that massive unseen part of me for the first time.
13 March 2013
I had a big seizure the other day and I made Matt cry. I’d been out modelling the day before, and in the evening I’d gone out with friends. The tiredness from that is what probably brought it on. I know it’s selfish, but I still want to go out and live my life, whatever the consequences might be.
Matt is finding it more and more difficult. I think he’s slowly coming to terms with the fact that he can’t do anything to fix my epilepsy. He’s such a motivated, ambitious person, so I can imagine how hard this is for him to accept.
We had a long, calm adult conversation about whether it might be better for the relationship if we lived apart. We still want to stay together as we both love each other very much, but it can be really tough being so close to each other all the time. I still want to be with him more than anything.
I’m very reliant on familiarity and routine, and this uncertainty about my living situation is unsettling me. Without certainty I can easily get confused and forget to take my tablets. Plus, any shift in my emotions can really impact upon my epilepsy.
15 May 2013
I’m in the middle of a cluster of seizures. I’m having loads, both big and small, and my body feels heavy from the exhaustion of this current barrage. The lethargy is really starting to do my head in. I want to keep up my gym and housework routine but I just can’t when I’m like this. Still, I’m trying my best to stay calm and allow this cluster run its course. Deal with it, Helen!
Interestingly, after the first of the big seizures in this cluster, I started to menstruate later that day, and it seems more and more likely that my seizures are linked with my sporadic periods.
When epilepsy is affected by the menstrual cycle in this way it’s called Catamenial Epilepsy – a really common subtype of the condition. Periods screw with seizures because oestrogen is a convulsant. So I’ve been having injections of progesterone (an anti-convulsant) in the hope that my periods will eventually shut down and improve my ‘time-of-the-month’ seizures.
When you’re in the middle of a cluster it’s hard to see out the other side, but I’m recovering well from each seizure, and although I’m tired, I feel safe and secure with Matt. We’ve decided to carry on living together.
18 June 2013
Realising that my epilepsy is probably linked to my menstrual cycle has given me an incredible boost. I’ve now discovered that I can have a progesterone jab more frequently in an attempt to nip my periods (and therefore perhaps a cluster of seizures) in the bud before they happen.
I’m feeling so positive at the moment. I’m experimenting with a low carbohydrate, high protein diet, as I’ve read this may help to control my energy levels. Seems good so far. Plus, I’m on top of my routine, which includes housework, gym, replying to emails and writing this diary (routine is what keeps me going). I’m even starting to have the attention span to read books again, which is just smashing. Matt and I are doing well. I’m trying to make a real effort for him now that I’m feeling a bit better, so I’ve been applying make-up and choosing my outfits to feel a bit more girly. It might sound like small stuff, but these are the little, tell-tale signs of a normal life that I’ve craved for so long.
For the first time in as long as I can remember, I feel optimistic about the future.
6 October 2013
So much has happened.
Matt broke up with me in July. I was devastated. One night while we were holidaying in the countryside I had a huge seizure – Matt said I was making demonic noises and my eyes were popping out of my skull; that it was like watching me die. I guess he couldn’t cope anymore. I miss him so much. I miss seeing his mum. I miss London and the friends I was making there.
I’ve moved in with my sister in Southampton, now. She decorated my room with pictures of friends and family, and I felt instantly safe and at home. Every day I have old friends contacting me and asking to meet up. I’m so lucky.
Despite the huge changes in my life, my health is improving. My speech is better and I’m reading more. It sounds silly, but I just can’t stop reading books! It’s such a wonderful feeling to be able to read and understand something without struggling. I’ve been researching more and more about nutrition for epilepsy, and have really upped my game. I’m now doing a ketogenic diet of high fat, moderate protein and almost no carbohydrates. This stimulates the release of ketones, which are natural anti-convulsants. It’s incredible! I can’t explain how much of a difference it’s made. I’m still making sure I take my tablets regularly, but if my progress continues I’ll see if I can lower my dosage.
I’m now hoping to start working regularly again, and I’m researching courses for study. I’m no longer ashamed of the person I am. I feel awake and everything is clear. For the first time in ages, my epilepsy is not defining me, and for the moment, at least, my life has a shape of its own.
Helen Sapper mentored overseas well being employees – often refugees from war-torn nations – learning for entry into health-related practice in the United kingdom
My mom, Helen Sapper, who has died aged 78, served as a general practitioner in Acton, west London, for far more than 30 years. Recognised by patients and peers as inspirational, she mixed excellent clinical competence with a holistic, compassionate approach. She grew to become a member of the Royal School of Standard Practitioners (RCGP) in 1962 and was made a fellow in 1992.
She was a trainer/teacher for health-related college students and GP registrars. She embraced multiprofessional collaboration extended just before it became the norm, and was concerned in investigation with the Healthcare Research Council and the RCGP. She undertook medical audit function inside her very own practice and much more widely. This, mixed with hospital accreditation visits, created her an clear and prepared resource for the neighborhood overall health authority for medical professionals in difficulty. She also mentored overseas overall health pros (mostly refugees from war-torn countries) studying for entry into medical practice in the Uk.
Born in Cardiff and investing her early years in Abertillery, south Wales, Helen was the only kid of her Mancunian mum, Gertie, and cockney dad, John, themselves the two born to Jewish immigrant dad and mom, who met even though functioning the markets. Aged 6, she undertook the journey to boarding college in Lytham St Annes, Lancashire, alone by train. She did not have a content time at school and sought refuge in empirical subjects, excelling in maths and science – as nicely as enjoying the piano.
She studied at the Royal Free hospital in Hampstead, north London, loving the freedom and camaderie. The reunion of her 12 months group that she organised in 1996 was a testament to how this group of girls have been element of a motion that broke the mould in the health care profession.
She met my dad, the trade unionist Alan Sapper, in the mid-1950s and they were married for 47 many years until finally his death in 2006. They had been a formidable team, and his achievements had been only made possible by her.
With extraordinary power and determination – particularly offered her sight and hearing constraints – she rebuilt her existence after supporting Alan by means of a series of illnesses that brought him to the finish his daily life in excess of a 5-year time period. Even in her own treatment method, with her advance directive (the wishes she expressed to her medical professional about the care she was to receive), she was constantly pushing the boundaries.
She is survived by my sister Sarah and I, and grandchildren Cate, Lizzie and Nathan.
