Insights after being ill with Guillain-Barré Syndrome

It’s been a long while since I’ve posted.

Last year I was ill with a serious auto-immune disease that I’d never even heard of before I was struck down by it.

I was in hospital as an in-patient for six weeks. Shocking. My life changed overnight. It was so weird to be confined to a hospital bed. To be on a public ward. Living among strangers. Ill but ignorant about what was wrong. Becoming increasingly disabled by the day. Unsafe to walk. My legs buckling under me. The reason unknown. I was just coping hour to hour. Learning to fit in. Watching and listening to what other people did so that I would know what to do. Feeling vulnerable. Nothing made any sense. Like a refugee, I kept my head down and tried to do the right thing. The approved thing. The acceptable thing. Out of my own space. Lacking autonomy. Lacking the ability to walk without collapsing. The illness – eventually diagnosed as Guillain- Barré Syndrome[1] – took my legs away.  It took my ability to walk away; to balance; to run.

No one told me about having a shower. And it was a weird set up. A wet room, possibly. But no slope on the floor so the water went everywhere. I didn’t even try it. I’m an articulate woman but I didn’t want to make a mess or do the Wrong Thing.

After five days in hospital I was transferred from an orthopaedic ward to a respiratory ward as my suspected, but not yet diagnosed, auto-immune disease might lead to collapse of my lungs and the need for intubation. I was wheeled into a side room. The views were amazing. I could see out over the town to the Surrey Hills beyond. Amazing. I had space and privacy. With my husband. But when he went home at night, I was isolated and alone. In pain and frightened. Unable to move. Unable to sleep. Unable to work the system. Pain. Backache. Pain. Staff came in from time to time but were strangers to me. Their world was not my world.

Some of the night staff were miserable and hard-faced. No warmth. No feeling. No care. Or so it felt to me.

My personal care – commode, washing, dressing – was often provided by middle-aged men. A shock.

No one really explained things.  It was only when a neurologist came to see me after 10 days that I begged her to sort out a shower and hair-wash for me. She seemed like an intelligent woman that I could identify with. Please help me, I begged her. Then two female nursing assistants took me into the shower and washed me. I had to be supported; held on the shower stool. Transferred there via the Sara Stedy. (I’ve just learnt that Sara stands for ‘Standing And Raising Aid’. I came to love and loathe this bit of kit. It got me off the bed and onto a commode so I didn’t mess up the bed or need to be catheterised. But the hard metal and rigid plastic, the ‘wheelbarrow for weak bodies’ hurt my legs like hell. My feet slipped forwards so my shins were grinding under all of my weight. When the bruises came, my shin bones hurt even more.) But being under the warm water; being dried on clean towels felt so good. The women helping me got wet but they didn’t worry. They commented that some hospitals provide wellies for staff washing patients like me. They wiped up the wet floor with my towel after my drying was done. I hadn’t thought of that. They dropped the towel in the laundry bin.  Now I understood how things were done around here. From then on, I asked and got a shower every five days, or so.

Now I’m over all of that. I’m walking again and fairly fit. I have a newfound sense of patient experience. I’m back to doing maternity advocacy work in maternity services and research. I’ve been reminded how it feels to be snatched from ordinary life into being an in-patient. Although I was ill and many pregnant women are completely healthy and well, coming into hospital and being a teeny weeny cog in a massive system of rules, care, drug rounds, staffing, have some similarities with aspects of pregnancy and labour care. I’m just saying…

In terms of maternity, things I have done this week have included:

  • Responded to reviewer comments on a journal article written with colleagues at City, University of London;
  • attended meetings at King’s College London as part of the new five-year ARC research and made plans with ARC colleagues for a new Facebook page on patient and public involvement in maternity research;
  • attended my local (Kingston) Maternity Voices Partnership (MVP) meeting, taken photographs and made notes for our social media;
  • contributed to the London MVP network and the Royal College of Obstetricians and Gynaecologists Women’s Panel (though that was more about HIV-related cancer and its treatment);
  • spent half a day with the mother of nine-month old twins and seen how life is unfolding for her;
  • made an appointment for MVP chair mentoring;
  • booked some training on Co-production – Teasing out the tensions;
  • secured funding for my expenses of attending an ‘unconference’, the Unconference for MVPs; a first for me.

[1] The NHS website describes GBS as ‘a very rare and serious condition that affects the nerves. It mainly affects the feet, hands and limbs, causing problems such as numbness, weakness and pain. It can be treated and most people will eventually make a full recovery, although it can occasionally be life-threatening and some people are left with long-term problems.’.

Are You Strong Enough To Change The World?

Heartmummy Musings

A couple of days ago, international breastfeeding expert Dr Jack Newman posted this on his Facebook page:

“On January 29 2016, the Lancet held a symposium on breastfeeding and its importance. Some big name speakers were there, including Dr Nigel Rollins, who is with the World Health Organization Department of Maternal, Newborn, Child and Adolescent Health. Dr Rollins spoke passionately about the importance of breastfeeding. Here are three quotes from his address:

Quote 1: “We have a growing body of evidence to support breastfeeding and as part of our review we came to be aware that women who want to breastfeed do not have the support that they often need. Gaps in knowledge and skills among health care providers often leave women without access to accurate information and support … investments to support breastfeeding are marginal and far from adequate.”

Quote 2: “Breastfeeding practices are highly responsive to intervention…

View original post 1,115 more words

Maternity Voices Partnerships – looking forward: innovation building on experience

This week I’m off to the East Midlands to facilitate implementation of the guidance on setting up Maternity Voices Partnerships. A great blog Catherine that will go on giving for months and months, if not years. And thank you for the plug for my article!

Birth & Biology

InstaQuote image

I felt honoured and inspired when I read Mary Newburn’s article in the March 2017 edition of MIDIRS Women changing maternity services.A look at service user involvement in the UK. It’s a love letter to a movement with a long history, an active present, and an important contribution to make to Better Births implementation.

It is so easy, as we know in the MSLC  and now Maternity Voices Partnerships (MVP) movement, for there to be confusion between engagement (focus groups and similar), and real involvement. We experience – or work for! – real and sustainable involvement in multidisciplinary forums. Local partnership groups, in which service users serve in equality with other members. In which recent service users are mentored by their peers to stay and become advocates and leaders.

View original post 849 more words

Service users’ influence in maternity services – Sydney Normal Labour and Birth Conference, October 2016

img_3849

I met so many great people at the Sydney conference. A mix of new contacts and researchers and midwives from Australia, New Zealand, North America, Sweden, Norway, India, Singapore, the Netherlands and the UK.

Sheena Byrom and I ran a workshop to introduce Midwifery Unit Network. A small group of midwives and a childbirth educator are going to set up Midwifery Unit Network Australia with the support of the Australian Midwives Association.

I gave a presentation about service user involvement in maternity services in the UK and about voluntary services. Here is my presentation, given 12 October 2016:

mary-newburn-normal-labour-and-birth-conference-sydney-oct-2016-final-for-wordpress-website

Following the keynote address by Professor Eugene Declecq, I now proudly consider myself a ‘persistent maternity activist’. Many others have been around a while working for change in maternity services. Persistence and activism both matter!

For those interested to learn more about the conference, the Twitter hashtag is  #normalbirth16. The Abstract booklet is also now available at:

http://www.westernsydney.edu.au/nursingandmidwifery/home/news-and-events/2016NLBC

Conference delegates were encouraged to knit squares for blankets  at the Yarning table. I got started on Day 1 and knitted a couple. Hundreds were produced in total.

There was a positive focus at the conference on honouring the Aboriginal and Torres Straight Islanders’ elders past and present. We learned about and were asked to support the New South Wales Aboriginal Nursing and Midwifery Strategy which supports Aboriginal people to undertake midwifery degrees.

Local partnership working in maternity – a day in the life #MSLCs #MatExp #MVPs

 

cstwsqrwiaax-va-swlondon-mslc-network-c-laura-jamesImage copyright Laura James, who presents on MSLCs at Women’s Voices Conference 2016

South London MSLC network

Yesterday morning, I was bound for St Thomas’ Hospital near Waterloo station, for the south London maternity services network gathering.  It’s our informal meeting for service user reps and interested others across south London, where there are 10 MSLCs in total.

St Thomas’ is the one that looks across the Thames to parliament. (Or the hospital that you see from The Terrace if you go to a smart parliamentary reception.) It’s the institution I am linked with via my work for Kings College London’s Women’s Division and CLAHRC[1] South London.  Armed with cake and tweeting en route, delayed by a late train and a mix up over the venue, I arrived to find mums with babies and two MSLC chairs already chatting. More and more people arrived. Until…

…we had a gathering of:

  • Two from St Thomas’, the co-chairs who invited anyone keen to stay on for lunch and to observe their MSLC meeting immediately afterwards.
  • Two from Bromley MSLC, where there is some great succession planning going on.
  • Two from St George’s, the current and immediate past Chair. Rosie Goode came with a commitment to get service users involved in the Personalisation and Choice Pioneer project in SW London, and happy exhaustion, having been right-hand woman to Milli Hill in organising last week’s first Positive Birth Movement Helen Gray IBCLC, brought PowerPoint slides to share with others, promoting ‘Women’s Voices’ work and MSLCs.
  • Two from Kings’, where one leads on social media and another leads the meetings.
  • A local mother who is setting up Everywomen came along with her baby.
  • Epsom and St Helier was represented by Maria Booker, whose paid work is with BIrthrights. (Birthrights CEO, Rebecca Schiller’s new must-read, Why Human Rights in Childbirth Matter, was launched last Thursday by Pinter and Martin at Effraspace.)
  • Midwife researcher, Wendy Carter, who came to talk about hypertension in pregnancy, how much women know about it and what MSLCs and service users think might be helpful in raising awareness and improving woman-centred care.

With me, that was 12 of us!

We started by asking what people wanted to get out of the meet-up. Needs and priorities were many and varied:

  • Updating on the refreshed guidance for maternity partnerships (MSLCs), which is in development, sponsored by NHS England.
  • Finding ways of marketing awareness of, and support for, the MSLC and succession planning.
  • Concern about the quality of postnatal care. Women feeling traumatised by poor support.
  • Need for more peer support postnatally.
  • Networking with other people and other MSLCs.
  • Increasing diversity and involvement in the MSLC.
  • Tips on how to run an effective MSLC and how to escalate issues / involve other agencies, such as the local authority, if necessary.
  • Sustainability and Transformation Plans (‘STPs’) see the following link https://www.england.nhs.uk/ourwork/futurenhs/deliver-forward-view/stp/
  • SW London as a Maternity Choice and Personalisation Pioneer see the following link https://www.england.nhs.uk/ourwork/futurenhs/mat-transformation/mat-pioneers/
  • How much MSLC budgets are/should be to cover community involvement activities.

By the time everyone had said hello and expressed their needs and priorities there was just an hour of the meeting left, a long list of fascinating and varied topics to consider AND a research project to explore.

 

Updated Maternity Partnership (MSLC) Guidance

I was able to share the updated (still draft) guidance, 2016 Guidance for Maternity Systems: Setting up and sustaining a Maternity Voices Partnership, with everyone. There should be a sharing version available by 12 November, the date of the NCT maternity services service user involvement day, being held in Bristol.  

Among our group today there was a good deal of support for a re-launch of partnership working and support for the new generic name:  Maternity Voices Partnership.

There was warm enthusiasm for clear guidance for commissioners, that MVPs need to be ‘well led and properly resourced’.

The draft guidance emphasises that there is a new commitment to the values and practice of co-design and co-production, recognition of need for community development work, and shared training to develop this way of working in every area through local maternity systems.  Everyone hoped that this impetus would move good practice forwards.

With so much happening in terms of strategic planning for maternity services in 2016 and the rights of service users to be involved in both shaping ideas and in decision making, guidance will be shared in draft while it progresses through the formal ‘gateway’ process for formal publications. This will speed up getting it into the public domain. NB: The ‘collective voice’ of women, families and communities should be  ‘integral … now, at this formative stage’.

There are around a dozen practical documents in the guidance: such as the principles of co-design and co-production, tips for commissioners setting up an MVP,  induction materials for MVP members, a terms of reference template to be adapted locally, help to get started in using social media, a voluntary organisations directory, training ideas and troubleshooting Q&As.

 

Sustainability and Transformation Plans

There is so much strategic planning going on at different levels. The Sustainability and Transformation Plans (flagged up at the start of the meeting) are one example. Another example, discussed at the Guy’s and St Thomas’(GSTT) MSLC meeting, later, was a GSTT Better Births board which coordinates developments from a range of working groups each following up different groupings of the 28 recommendations in the Better Births report.

My contact at NHS England feels it is impossible to give definitive guidance on which specific planning groups and plans MSLCs (or MVPs), should be involved with. Things are changing fast (and it is easy for service users who volunteer, or are paid to work part-time on their MSLC, to feel overwhelmed by demands). Rather than give a blue-print list, her suggestion was to create a culture locally where service users are assertive and valued; where they are involved. This means getting managers, and different groups and bodies within, and above, the local maternity system, to explain significant planning mechanisms and the timeframes for involvement and decision-making. It won’t be possible to participate in a meaningful way in all the development initiatives, but there should be transparency, clear induction for MSLC/MVP members and regular reporting, so that service users can say when and how they want to be involved, and be worked with as equals.

 

Information support and care for women with hypertensive disorders

Midwife, Wendy Carter shared key findings from her PhD study Speaking up, Listening and Responding: an in-depth qualitative case study exploring factors affecting women with signs and symptoms of pre-eclampsia seeking help. The themes emerging from the research so far, resonated with MSLC members. Despite having had children and being involved in maternity for quite some time, several said that their own knowledge about hypertensive disorders in pregnancy was quite limited.  Information published by Action on Pre-Eclampsia (APEC) was praised as useful by one antenatal teacher. Ideas about sensitive and effective times and places to address the gaps in knowledge were passed on to Wendy.

 

Practical tips for chairing and co-production

Helen Gray emphasised the importance of cutting to the chase in meetings and spending time on the important substantive topics.

Rosie Goode, suggested having one main topic per meeting, so that some real work could be done, rather than just skimming the surface was valuable.

Laura James described how in Bromley parents are invited via the Facebook group, Twitter and posters in the hospital to attend a get together in a community setting or someone’s home to share their positive experiences and any concerns. The feedback is written onto coloured post-it notes and stuck onto sheets labelled ‘Congratulations’ and ‘Considerations’. These are taken seriously by managers. The feedback is displayed publically in the hospital. Staff who are praised by women and families for their care get recognition for it. Negative feedback is also fully acknowledged and actions are planned to address it.

At the GSTT MSLC meeting a consultant midwife at St Thomas’ also described taking action to address staff behaviour after listening and hearing negative feedback from women at the debriefing service the trust provides.

The value of the chair (or chair team) planning consciously before a meeting what they want to achieve, was also discussed. And working to the principle of ‘You said, we did’ to ensure that actions are both planned and reported.

 

Agreements

Everyone present consented to photographs being taken and their contact details and social media names being shared with the name of their MSLC, to facilitate networking in between meetings.

We agreed to share documents across the network, such as MSLC presentations, ideas, good practice tips, annual reports, meeting agendas and minutes.

The next meeting will be in November in the same venue as there was plenty of space for adults and South London MSLC network meeting.

 

And the rest…

Quite a lot more was shared, such as…

Women’s Voices Conference 2016 – This really exciting event organised by South London mother and MSLC member Michelle Quashie, on 1st October, can be booked at  https://www.eventbrite.co.uk/e/womens-voices-conference-2016-tickets-25598971212

Vaginal breech – Rosie Goode said that GSTT had recently provided vaginal breech birth training for quite a lot of their staff, and so St Thomas’ was a good place to book for women with a persistent breech baby wanting a vaginal birth, plus other south London trusts could learn from this example.

Booking with a trusted and admired home birth team if out of area – Emily Levis (Stowe) said she was aware of women outside of the catchment area for St Geoerge’s Hospital were wanting to book with the St George’s home birth team, and what was there right in this regard. On reflection, it would be useful to get view from Birthrights on this question. It occurs to me that if they are close to the boundary and/or the quality of service offered by the service covering their street/postcode is demonstrably less good in some way, they might have a good case to make. But ask the experts!

Please add to this if you were at the meeting.

[1] Collaboration for Leadership in Applied Health Research and Care, is a research initiative ‘Investigating the best way to make tried and tested treatments and services routinely available.’  Find out more about the maternity research.  Follow @CLAHRC_SL

.