A tale of two births (4)

Please welcome back Afni who is sharing her story of her two pregnancies and her experiences both good and bad as part of a series of blogs related to maternity safety. This blog moves from her first pregnancy and finds her a few years later experiencing her second pregnancy.  Over to Afni….

So dear reader, you have read the story of my first pregnancy – let’s move on to my second.  Well, they say history repeats itself. I had no idea that if you had experienced it in your first pregnancy that I was highly likely to get it again.  So yes, I suffered Hyperemesis in my second pregnancy – in fact it was worse the second time.  This time round I could barely move without feeling or being sick.

My GP was fantastic and not only provided me with the right medication she booked me in to see her very week. As I said before little things really matter – whether they are good or bad.  For example when I attended the GP for my appointments the receptionist would tell the GP as soon as I arrived so that I could be seen as quickly as possible and find me in an empty room so that I could be sick without anyone watching. The GP tried really hard to seek advice from the gynaecologist about what the latest treatment was for hyperemesis. She also tried unsuccessfully to get me admitted.  The gynaecologist said I had to fit the exact criteria for admission.  These in particular were ketones in my urine of more than 3, and severe dehydration.  But despite having lost over 3kgs, my ketones were less than 3.  I found out later that this was the case because of my Asian heritage and baseline low weight.  Some people just simply don’t produce the same level of ketones than others but that doesn’t mean that they are not extremely unwell.

I was booked into see a midwife who this time was sympathetic but didn’t seem to appreciate the urgency of needing to see a consultant for help. Instead she referred me back to the GP.  The GP did her best to help but nothing seemed to control the relentless vomiting.  This is when the depression started.  So one day I had had enough. I took myself off to A&E because I had severe constipation, dehydration, and side effects of the anti-sickness medication.  The A&E staff called the gynaecologist and asked him to come and see me.  He said no, unless my ketones were more than 3.  Even though I could barely pass any urine, when tested the ketones were less than 3. I was sent home.

KEY THEME NUMBER FIVE – SEE THE PATIENT AS A WHOLE

When people are ill in hospital and depend on others to look after them, it is of fundamental importance to them and their families that they will be cared for with kindness and compassion by everyone they come into contact with. If you want to know what it is like being a patient in hospital the best thing to do, is ask them and to listen.  The patient needs to be ‘seen as a person’ – not a set of numbers – so look past the set criteria and look at the patient first and foremost.

If we want to know how a person feels, we must begin by acknowledging the fact that there is one and only one observer stationed at the critical point of view …she is the only person who has even the slightest chance of describing ‘the view from in here’, which is why her claims serve as the gold standard against which all other measures are measured.

[Gilbert D (2006). Stumbling on Happiness. New York: Knopf.]

I finally got to see a consultant who was, after some lengthy arguments, able to get me admitted to hospital. She told me that she had to argue my case with a junior doctor who was somewhat obsessed about the level of ketones in my urine.  I had all the other symptoms of severe constipation, inability to eat for over 48 hours, vomiting even after drinking water, and a weight loss of now 6kgs.  On admission the junior doctor told me that ‘normally we would not admit you but your consultant pulled rank’.

The midwife who admitted me quickly realised I needed intravenous fluids and intravenous anti sickness medication. However, that was as good as it got.  Another ‘Déjà vu’ – I was left alone; no one came to check on me, there was nothing for me to eat even if I could eat, as they had no gluten free food.  The only person I saw was a healthcare assistant. Ironically the board above my bed had ‘hello my name is’ at the very top but nothing else; none of my details, or who I was under or what I was allergic to.

KEY THEME NUMBER SIX – COMPLIANCE IS NOT IMPLEMENTATION

Simply saying that an organisation wants to be the safest in the world or that they have embraced campaigns like ‘hello my name is’ is not enough – it actually has to be implemented and embedded so that it moves from theory to reality.  Implementation is hard to get right. But it is vital that initiatives like ‘hello my name is’ are implemented in the spirit in which they were designed.  Simple compliance is not enough.  It has to be lived and real not just a sign above someone’s bed. As the lovely Kate Granger said…

I firmly believe it is not just about common courtesy, but it runs much deeper. Introductions are about making a human connection between one human being who is suffering and vulnerable, and another human being who wishes to help. They begin therapeutic relationships and can instantly build trust in difficult circumstances.

Kate Granger – http://hellomynameis.org.uk/

I arrived during the day and at the handover between day and night the nurse said she didn’t know why was I was admitted and the healthcare assistant who was the only person I had had contact with couldn’t explain.  Now reader, I don’t want to go on about the negative side of things but as I have said time and time again it is the little things that matter. While I was in hospital at no point did I see anyone wiping the equipment between patients or washing their hands.  That doesn’t mean they didn’t, I just didn’t see them do it and it made me feel really unsafe. Another strange thing was that the healthcare assistant didn’t want any of us to walk to the toilet, preferring for us to use bedpans instead. Believe me when you are feeling sick, have pelvic problems and hypermobility it’s a very hard thing to do to balance on a bed pan!  Also I was provided with DVT stockings to put on – but with no help that too was a major task. Every time I bent down I was either going to be or was sick.

The next morning there was no breakfast for me because no one had ordered a gluten free breakfast and I was given raw oats which unfortunately unbeknown to me had been cross contaminated with some wheat and I had an allergic reaction to them. I could feel the reaction coming on and buzzed for attention – but no one came and I was panicking not sure how bad it was going to be so I ended up taking my own anti-histamine.  When they did eventually come I told them what had happened and they didn’t seem that fussed; there was no further monitoring to check if I was recovering.  When I was finally seen by a gynaecologist he said…

I think it’s safer if you are not in hospital’

He prescribed some medication and discharged me.  On discharge I checked the drugs provided and not all of them were there; also there was no discharge letter.  I waited for the missing drugs.  There were three types of anti-sickness pills and it was only when I bumped into one of the nurses on the way out did I get told not to take them all at once.  That they were supposed to be staggered but that had not been made clear to me.  It’s weird isn’t it, you become very passive as a patient and I often wonder what if she hadn’t done that.  I could easily have overdosed.

KEY THEME NUMBER SEVEN – COMMUNICATON REALLY IS AT THE HEART OF EVERYTHING

Encouraging conversation doesn’t mean asking people to shout louder to be heard.

As Margaret Wheatley once said,

“I believe we can change the world if we start listening to one another again”

Wheatley M (2009) Turning to one another; simple conversations to restore hope for the future San Francisco: Berrett-Koehler Publishers Inc.

Time, it’s one of the greatest causes of communication breakdown in every area of the NHS. A study by BMJ Quality & Safety this year found that 66% of nurses felt they didn’t have time to comfort or talk to their patients on their last shift.  As part of the Sign up to Safety campaign they have been raising awareness about the importance of communication via the #justaskme film ([1] )  You can read much more about conversations to create safety in many of the blogs here at:  www.suzettewoodward.org

or at www.signuptosafety.nhs.uk

[1] (https://www.england.nhs.uk/signuptosafety/justaskme/talking-about-talking/)

After my admission I talked to my GP and we both decided I needed to try a completely different hospital. I had chosen to go to the same hospital as my first born because I naively thought it would be different from my first experience.  But it seems that the culture of that first hospital was pervasive and that nothing had changed.  I was therefore transferred to another hospital.

And this was when I finally realised what good looks like.

Everything about this hospital was fantastic. The booking-in was methodical, everyone completely understood hyperemesis, I was referred immediately for counselling to help with depressive symptoms of nausea, referred to another physio for the Symphysis Pubis Dysfunction, and referred to an anaesthetist who also had a clear understand about my allergies. They all put a clear plan together.

It felt individualised, it felt personal, it felt like I was truly being cared for.

I was updated by phone and text on a regular basis by so many including the anaesthetist who kept reassuring me about the plan.  The team also understood the impact of my ethnicity on issues like hyperemesis and on the growth development chart for the baby.

I progressed towards my second birth with a much calmer mentality. I felt safe.

At the birth the team were methodical, supportive and structured and they put allergy alerts everywhere. Nothing was too much trouble.  I was not forced to lie down – everything felt like a completely different experience that I so wished that I had had in my first pregnancy.  This was true partnership care – we made decisions together.   My family were involved and also commented on how professional everyone was and how clean it all was.  On admission the midwife immediately alerted the anaesthetist so that they could be on standby if I had any problems. Nothing was rushed during or after birth.  My husband was also cared for and allowed to heat up the gluten free food he bought in for me so that I didn’t get any cross contamination.

The crucial thing here is that this wasn’t just one midwife or one doctor – this was everyone. The culture right across this organisation had truly embedded a culture of safety and caring.

KEY THEME NUMBER EIGHT – CULTURE – HOW IT IS NOT JUST ONE PERSON IT IS EVERYONE

A positive safety culture is where EVERYONE within an organisation has a constant and active awareness of safety. The culture of an organisation is the way people behave; their beliefs, values, attitudes, norms, and unspoken assumptions and working practices together with entrenched processes that shape how people behave and work together. It is a very powerful force and something that can remain even when teams change and individual staff move on.  An organisation with a safety culture is one where patient safety is at the forefront of everyone’s minds; not only when delivering healthcare but also when setting objectives, developing processes and procedures, purchasing new products and equipment, and redesigning clinics, wards, departments and hospitals. It influences the overall vision, mission and goals of an organisation.  That is, it influences everything you do.

A positive safety culture will help NHS organisations to achieve improvements across the board.  This requires changes at all levels of the NHS. It is vital that all those who work in and use the NHS; clinicians, managers, accountants, porters, receptionists, allied healthcare practitioners, patients, families and carers – ask themselves how they can help to improve the safety of patient care.

The leadership of any organisation is central to setting the values and beliefs of an organisation’s culture. The chief executive, the board and directors and leaders throughout the organisation therefore have a vital role to play in building a safety culture. They need to establish an environment where the whole organisation embeds the values of caring, kindness, compassion and all of the other themes throughout my blogs:

KEY THEME NUMBER ONE – BEING LISTENED TO

KEY THEME NUMBER TWO – TAKING CONTROL AND TRUE PARTNERSHIP WORKING

KEY THEME NUMBER THREE – PREVENTION IS ALWAYS BETTER THAN CURE

KEY THEME NUMBER FOUR – PAY ATTENTION TO THE LITTLE THINGS

KEY THEME NUMBER FIVE – SEE THE PATIENT AS A WHOLE

KEY THEME NUMBER SIX – COMPLIANCE IS NOT IMPLEMENTATION

KEY THEME NUMBER SEVEN – COMMUNICATON REALLY IS AT THE HEART OF EVERYTHING

KEY THEME NUMBER EIGHT – CULTURE – HOW IT IS NOT JUST ONE PERSON IT IS EVERYONE

Thank you from the bottom of my heart for taking the time to read my story.

Afni

A tale of two births (3)

Please welcome back Afni who is sharing her story of her two pregnancies and her experiences both good and bad as part of a series of blogs related to maternity safety.

Over to Afni….

If it doesn’t rain it pours.

It was around the 5th month when I developed something called Symphysis Pubis Dysfunction (SPD) and hypermobility.  This combination causes severe pain around the pelvic area and makes it difficult to walk, or go upstairs or stand on one leg or turn over in bed.  You know that thing they say about pregnancy being blissful and filled with joy? I wasn’t experiencing much of the bliss or the joy at this point.  So I was referred to a physiotherapist who provided me with a belt and some exercises which, I know I am going to sound so ungrateful, they in fact aggravated the problem!  So I took control again and went to see an osteopath instead.

So dear reader – as you know one of my main anxieties I had was being prescribed and given drugs which I am allergic to. If I do have these I don’t just feel unwell I have an anaphylactic reaction and collapse.  So you can see why I was getting really stressed about the inadvertent administration of the wrong thing.  I was therefore relieved when at month seven I got to see the consultant anaesthetist.  This person completely understood my allergies, my anxieties and assured me by writing in red all over my notes. 

KEY THEME NUMBER THREE – DRUG ALLERGIES NEED TO BE TAKEN SERIOUSLY 

While all drugs can have side effects, some can lead to allergic reactions caused by drug intolerance. Drugs often responsible for allergic reactions include antibiotics, general anaesthesia, and painkillers such as aspirins and ibuprofen.  In certain cases, the reaction can be severe. Each year around 62,000 people are admitted to hospital after experiencing a serious allergic reaction to a drug. Between 2005 and 2013 there were 18,079 of such incidents, which included 6 deaths, and 19 people who were severely harmed.

There are several reasons why people with drug allergy are currently being prescribed or administered drugs that they are allergic to. These include poor clinical documentation of drug allergy, the lack of patient information on drug allergy, and the lack of a routine system in place for people to keep a record of their own drug allergies. To tackle this, NICE has published a new guideline on the diagnosis and management of drug allergy in adults, children and young people.

The guideline recommends that when a person presents with suspected drug allergy, their reaction should be documented in a structured approach. Among the information included should be the generic and proprietary name of the drug or drugs suspected to have caused the reaction including the strength and formulation, a description of the reaction, and the date and time of the reaction.  NICE recommends that paper or electronic prescriptions in any healthcare setting should be standardised and redesigned to record information on which drugs or drug classes to avoid, reducing the risk of drug allergy.  Clinicians should check a person’s drug allergy status and confirm it with them, or their family members or carers as appropriate, before prescribing, dispensing or administering any drug.  If there is a change in drug allergy status, the patient’s medical records should be updated and their GP should be informed.  In addition, clinicians should discuss the person’s suspected drug allergy with them, and their family members or carers as appropriate, and provide structured written information. They should record who provided the information and when. They should also ensure that the person and, their family or carers as appropriate, are aware of the drugs or drug classes that they need to avoid.

I reached month 9! I got there.

Despite everything I was nearly at the end.  But at 39 weeks I am still vomiting and have permanent headaches.  So my new midwife and I agree that I should be admitted to hospital to see if we could progress the labour.  She arranges for me to be admitted.  When I arrive, the receiving midwife is annoyed that the referring midwife hadn’t phoned ahead and makes the assumption that I am suffering from a migraine.  She doesn’t seem to take a detailed history – well she doesn’t ask me anyway.

So dear reader we have finally arrived at the birth.

On admission I was having severe contractions but because I was not dilated was admitted to the pre-labour ward. The pain was excruciating but it took over an hour for any pain relief to be given.  I was told that they didn’t have any gas and air on the pre-labour ward.  I number of things made me feel so unsafe and so uncared for:

  • I was prescribed medications I was allergic to
  • They sent my husband home (before he could give me my hospital bag) because visiting hours had finished
  • I had nothing to eat or drink – you may recall that I have a number of allergies and need a gluten free diet – this was not available on the ward
  • I am in a room all on my own and no one comes when I call

Shortly after sending my husband home I am checked and they realise I am dilated to 5cms so they call my husband back; and to my surprise they also wheel out the gas and air. I am moved to the labour ward.  At this point I am dehydrated, my blood pressure is up because I was stressed and in pain.  The midwife inserted a drip.

In my birth plan I had asked that I would not give birth lying down. The reason for this was not just a preference, it was a necessity.  When lying down I couldn’t push properly because of the hip problems I had.  But the plan was not known, not acknowledged or simply ignored and I was forced into stirrups on the bed; this I believe was the reason why I suffered a second degree tear.

After giving birth I was taken to the post-natal ward and sadly there was still no food for me because no one had ordered any gluten free food for me. By this point I had not eaten for over 18 hours and I was severely dehydrated.  Despite that my husband was not allowed to heat up some gluten free food he had bought in for me.

KEY THEME NUMBER FOUR – PAY ATTENTION TO THE LITTLE THINGS

The little things really really matter, that includes:

  • Failure to respect my feelings or my wishes – not being listened to – in general a lack of patient centred care
  • Understanding that safety is not just about single incidents or issues of avoidable harm such as falls or pressure ulcers; safety is a feeling, an experience. It is also about feeling both emotionally and physically safe
  • Understand your patient’s condition – in my case, hyperemesis and its impact
  • There were some moments that were great; the GP was as always fantastic, some of the midwives too but it is all summed up by one midwife who lives in my memory. I can clearly recall her interrogating me as to why I had changed my midwife during the pregnancy – she was horrified and kept telling me that the midwife I chose to transfer from was one of the best. She left me in floods of tears and didn’t seem to care.

 

A tale of two births (2)

Please welcome back Afni who is sharing her story of her two pregnancies and her experiences both good and bad as part of a series of blogs related to maternity safety.

Over to Afni….

Dear reader, you will recall that I was sharing the early days of my first pregnancy where I was diagnosed with hyperemesis. I had received a mixed reaction; really supportive GP, really unhelpful midwife.

So after some persistence on my part I tried to get an appointment with a consultant. I wanted someone who would know all about hyperemesis, but more than that I wanted someone listen, to truly understand how awful it was and to make it all better.  The first appointment was arranged by my midwife who for some reason picked a day which was the very day I said I wasn’t free.

It’s the little things like this that start to really stress you out.

The doctor I saw thought I needed counselling to cope with the emotional despair and anxiety, so I was referred to a gynaecologist who specialises in mental health and anxiety. Initially we got off on the wrong foot, with the gynaecologist refusing to see me at my first appointment because I turned up without my notes.  I had not forgotten them; its just no one had told me that I needed to bring them along.  I am sure as the reader you will be thinking but surely she would realise this, but you may recall I am being sick all of the time, I have barely eaten a thing and I am shattered, so my brain isn’t working as it should do – so when you feel like that the more simply instructions you can give the better.

So I had to wait for a second appointment.  But.. at the consultation, rather than listen to my concerns and my desire to take away the symptoms of nausea and vomiting, she said I had to take anti-depressants. There was no discussion as to the pros and cons of this, or whether I could take them given my allergies or whether there were any alternative treatments.  Nothing – just here you go have some pills.  So I went back home with little to help me stop this incessant sickness.  I now started to feel a degree of despair, which I would suggest was different from depression.  Its a feeling of hopelessness rather than deep sadness.  So my wonderful GP referred me for cognitive behavioural therapy which did help over time.

I kept seeking solutions; none of them worked.  For example the midwife told me that if I drank yogurt based smoothies that would make it all better but these just made me even more sick. I felt like I and the GP were the only ones who truly understood what hyperemesis felt like.  I kept searching and found out about a pregnancy club who could provide me with the kind of support I needed.  They told me that it was ok to change my midwife if I didn’t feel cared for or safe.  At this time I also had the support of a friend who was a midwife who spoke to my midwife on my behalf because I simply felt like no one was listening to me.  This helped me gain just a little bit of control.  I changed my midwife and was referred to an anaesthetist who would understand what drugs I could and couldn’t have in labour – one of my main anxieties.

KEY THEME NUMBER TWO – TAKING CONTROL AND TRUE PARTNERSHIP WORKING

Taking control is not just about asserting my needs as an individual it is about co-production and partnership as a way of delivering and receiving care. It involves working in equal partnership between health professionals and those they care for.  One of the frameworks that really help describe what this is, is that of Nesta’s six principles of co-production:

  1. Building on people’s existing capabilities: altering the delivery model of public services from a deficit approach to one that provides opportunities to recognise and grow people’s capabilities and actively support them to put them to use at an individual and community level.
  2. Reciprocity and mutuality: offering people a range of incentives to engage which enable us to work in reciprocal relationships with professionals and with each other, where there are mutual responsibilities and expectations.
  3. Peer support networks: engaging peer and personal networks alongside professionals as the best way of transferring knowledge.
  4. Blurring distinctions: removing the distinction between professionals and recipients, and between producers and consumers of services, by reconfiguring the way services are developed and delivered.
  5. Facilitating rather than delivering: enabling public service agencies to become catalysts and facilitators rather than central providers themselves.
  6. Assets: transforming the perception of people from passive recipients of services and burdens on the system into one where they are equal partners in designing and delivering services.