Let’s Listen Part 2 by Karen Robertson

NES AHP Career Fellowship Project by Karen Robertson, Occupational Therapist for Children and Young People     

What does effective family-centred AHP neonatal and developmental follow up really look like? Part 2

Context

In Part 1 of this blog, I shared my perspective on the earlier stages of my NES AHP Career Fellowship experience.  I discussed the opportunity and learning that has come from rich lived experience conversations with our local families who are accessing our AHP neonatal and developmental follow up service. 

National guidelines informing neonatal and follow-up services advise around evaluating infants’ needs and promoting family-centeredness is a key recommendation (NICE 2017).  Locally, our AHP neonatal and developmental follow up service is delivered by an existing pool of CYPF AHP’s and therefore capacity to do so remains limited, not ring-fenced and essentially fragile.  Our AHP team wished to better understand what family-centeredness looks like within deliverable practice locally while recognising the constraints of our service.  We wanted to explore the question;

If we only have a limited time with this family and their baby, what will make the most positive impact for them now, and for the future?”

Policy informing healthcare in Scotland is underpinned by values such as partnership and integration and participation and engagement advocating continual improvement, creating the opportunity and environment to co-design services and honesty about priorities and constraints around what can be co-produced (Scottish Government 2016; 2022).  This project has involved a response to families lived experience stories of participation to “further upskill AHPs and influence our future decisions about our ways of working and creating environments in which participation and participative relationships are possible.” (Scottish Government 2016)

Immersing in local lived experience

I recall feeling a sense of privilege to hold such rich information, as well as a responsibility to make sure it was handled with sensitivity, respect and managed in a way that would have the greatest impact for local families.  Our next step was to make sure we could truly understand the wealth of information and what it could enable us to think about. 

Key themes with underpinning sub-themes very quickly and consistently emerged from local lived experience stories which we immersed ourselves in as a team:

– Parenting on the Neonatal Unit

– Empowering families to access therapy support and the team around the family

– Supporting parental wellbeing

– Communication and resources

– The focus of developmental follow-up appointments

– Empowering parents to advocate for their child beyond follow-up

Family-Centred & Family Integrated Care

It was important to understand how local lived experience could be considered within wider frameworks informing on family-centred care.  Within healthcare for the neonatal population, the British Association of Perinatal Medicine highlights the augmented nature of family-integrated care beside family-centred care.  With the key being to not only ‘involve’ but to ‘enable families as partners in care’, as AHP’s our core skills within CYPF practice most certainly stood us in good stead for applying this framework to our neonatal and follow up practice.

(BAPM 2021)

BAPM (2021) highlight 5 key principles of family-integrated care when working with this healthcare population within neonatal care. 

https://hubble-live-assets.s3.eu-west-1.amazonaws.com/bapm/file_asset/file/793/BAPM_FICare_Framework_November_2021.pdfre

Co-designing as a team

As an AHP team, we met to explore how we could realistically approach service improvement, within the scope of the project itself, our AHP roles and remit while holding on to the fact that our service is not ring-fenced and fragile.  At this point, it felt enormous as all the data, with every parental quote felt important.  This is when QI tools such as the high/low effort/impact scale became our friend to enable us to set realistic project goals.  Another key asset was to consider what was within our circle of control and influence versus what would be reliant on wider complex systems. 

Throughout December and January, we met as a team to collaboratively embed the local lived experience themes within each stage of our own AHP neonatal and developmental follow up care pathway.

We aimed to approach our service redesign to….

  • concentrate resource utilisation on where it is of most value and will have the most impact by responding to local lived experience
  • reflect the underpinnings of AHP policy in Scotland & existing models of family-centred care for this healthcare population
  • outline delivery of a realistic and sustainable local AHP service

Sense checking with families

In February, we were delighted to host a ‘together session’ with participating families as an opportunity to share our thoughts so far on our service redesign based on their lived experience.  This brought about a further opportunity to sense check with families that we were going in the right direction, and equally to prompt us to do so if we weren’t!  Via a questionnaire following the event, 3 participating families shared with us that they think our service redesign proposal…

Key outcomes from the project

As an AHP team together with local families, we have been able to create

  • an AHP service name, role and remit with an ability to be recognised for what we are and can do more of for local babies and families.  We will be able to measure our impact and measure, manage and report on mitigation of risk with any incidence of unmet need.
  • an AHP Neonatal Service Leaflet, outlining the roles and remit of the team, and to provide families with agency over when and how to seek support. 
  • A value based co-redesign proposal for an AHP Neonatal and Developmental Follow-Up Service based on lived experience of local families
  • A journey map of resources for this population including available evidence based resources, and co-produced resources with visual supports across AHP team with family consultation.

If you would like to know more about this project, including the lived experience theme and sub themes, the co-redesign proposal our team are planning to implement and test and our long term vision, you can access a SWAY via this link: https://sway.cloud.microsoft/PoaVloHapya97zaH?ref=Link

So what’ next?

With supportive leadership across our AHP team leads and AHP management, we have permission to proceed with the next phase to test our service redesign proposal.

As well as being able to audit our requests for support quantitatively with this healthcare population, we have now embedded lived experience feedback opportunities for families into our core pathway to understand the impact.

Non ring-fenced AHP capacity means that service fragility is still a very real constraint facing CYPF AHP services.  Our approach moving forward must be fluid, dynamic and responsive to needs of our local families balanced with wider CYPF service constraints.

In line with Ready to Act (Scottish Government 2016) in increasing appropriate access to interventions at universal and targeted levels of service as needed for improved well-being outcomes; we aim to explore how the journey map of resources can be made available for all neonatal families who are not receiving follow up.

Personal reflections – together truly is better!

As I approach the final weeks of the project phase, I am considering the impact that the experience has had on me.  To mention my main learning outcomes would be a blog in itself, and so Ill skip to the headline; my most valuable (and unsurprising to me) learning outcome.  This is that working together to co-redesign and co-produce really is better.  When I review what we have achieved locally, I am full of pride to notice a part of each and every one of our local families and colleagues who participated and I thank each and every one of them.  I would extend this understanding of co-redesign and therefore thanks to everyone locally and further afield who helped in any way to support his project.  Service improvement relies on wider ingredients from supportive leaders to advising teams behind the scenes. Thank you!

If you would like to know more about the AHP Neonatal & Developmental Follow Up role, any aspect of our local practice for this health care population, or about this Career AHP Fellowship project, please get in touch.

Karen Robertson Karen.Robertson8@nhs.scot; @KarenOTRob

Blog part 1- AHPs across health and social care.

NICE 2017 – Overview | Developmental follow-up of children and young people born preterm | Guidance | NICE

Scottish Government 2016 – Ready to Act – A transformational plan for Children and young people, their parents, carers and families who require support from allied health professionals (AHPs)

Scottish Government 2022 – National Workforce Strategy for Health and Social Care in Scotland.

On being an LGBT+ Ally

To mark LGBT History Month, the Dumfries & Galloway HSCP LGBT+ Staff Network reached out to our Allies to ask them what being an LGBT+ Ally means to them. These wonderful folk have signed up to the Pride Pledge to show their support and understanding for members of the LGBT+ and ethnic minority communities working within NHS Dumfries and Galloway Health & Social Care Partnership.

Wearing the Pride badge has a huge impact for both staff and patients/clients, knowing they can approach and speak to a person who is supportive, understanding and non-judgemental towards their specific characteristics is massively reassuring.  You can sign up for the Pride Pledge and Badge by contacting dg.ODL@nhs.scot

We’re delighted to share reflections on allyship and the value of the Pride Badge from four of our Allies: Karen Clapperton, Jan Crooks, Euan MacLeod and Nick Morriss and are very grateful to them for their contributions.

If you’d like to join the LGBT+ Staff Network, or support us as an ally, get in touch at dg.LGBTNetwork@nhs.scot

Anne Allison

Chair,  LGBT+ Staff Network

Karen Clapperton, St Michaels and New Abbey Community Nursing Teams

I am very happy to be a LGBT+ ally and I wear my badge with pride (see what I did there?). I have a lovely story I would really like to share.

Some time ago, I had arranged to meet a student who was joining my team to do her penultimate nursing placement. I went to the meeting place arranged and was met with a wee bit nervous, but warm and friendly smile. I introduced myself and off we went.

We had a lovely day, she was friendly, down to earth, keen to learn and very good with the patients.

A few weeks into her placement, she told me that she had never come out as gay during her placements until the very end and usually after she had been graded. I asked why and she said that she normally felt uncomfortable because she had heard people talking unkindly about gay people she was always guarded. She said on the first day when I went to meet her, she noticed I was wearing my NHS pride badge and she felt relaxed and that she could be herself.

I can’t deny that it is a bit disappointing that it took nearly to the end of her 3 years of training to feel comfortable enough to be open and be herself but she wasn’t like that with me simply because I was wearing my wee badge! You never know the difference the smallest gesture can make to someone. Congratulations to the team responsible for the badge pledge project. It has made a difference!

I am happy also to report that she qualified and has made an excellent, caring, compassionate and conscientious nurse. She wears the wee badge too!

Jan Crooks, Family Nurse Partnership

I pledge to ensure within my work, volunteering and personal life that;

  • I welcome the entire diversity of LGBT and community
  • I try my best to never make assumptions about pronouns 
  • I will never be judgmental 
  • When I ask anyone’s names, I will also ask how they want me to address them 
  • I will respect and use the pronouns my clients and everyone I meet in my life asks to be called
  •  I will apologise if I get things wrong and will reflectively learn if I do 
  • I value individuals for who they are
  • I ensure that within my clinical practice I promote and practice the health, well being and equality of everyone 
  • If I am unsure about anything I will ask the individual and will seek advice from recognised LGBT support networks
  •  I will support my colleagues, friends, family, volunteers I meet, to prioritise all the things I pledge 

Euan McLeod, Strategic Planning and Commissioning

Prejudice has many faces – sometimes it is overt and destructive-sometimes it is more subtle and disguised-but whatever form or face it presents it needs challenged. That is why being an ally is important – I am happy to do my bit to challenge that prejudice.

I know many people who have faced prejudice because of their orientation – within my Christian circles this has provoked much dialogue – some of it constructive, some less so.

Rob Bell in his book “Love Wins” writes about the need to recover the message of love within the Christian doctrine, “Love Wins” is an affirmation to triumph over hate, discrimination, and other negative energies. It calls for people to recognize the power of love and its ability to overcome obstacles encouraging understanding and nurturing balance. Why wouldn’t you?

Nick Morris, Chair, NHS Dumfries and Galloway

I have spent 43 years working in Health and Social care across a range of organisations, and throughout that time the most enjoyable times have been spent in teams where we challenge each other, learn from each other and value the contributions that others have brought to the work we deliver

No one person will have the answers to all the challenges we face. A strong team that draws on the diversity of its members is more likely to develop an approach that best meets the needs of the patient, the staff and the organisation. To gain this advantage however, all members of the team need to respect the contribution of all the members. We all walk in our own shoes and whilst we might try to gain an understanding of someone else’s lived experience, we can never truly feel or think as others do – hence we need to enable a culture that enables the voice of all members so that we all feel an equal part of the team that benefits from the unique insights we all bring 

How does this relate to the LBTI+ workforce and my role as an LGBT+ Ally?

An organisation that respects the diversity of thought and opinion of all its members is one that is likely to effectively meet the needs of the people who look to us for support. An organisation that is in conversation with itself, encourager debate, is curious to learn and to challenge what we do, why and how we do it and how we can improve, is safer for its staff and its patients. (Michael West et al).

Such an organisation will have a thorough respect and a positive attitude to all the diversity of its membership. The equality and respect with which this organisation provides to the LGBT+ community within us and as part of the D&G population is a test of the approach we take generally, and if, as an LBTG+ Ally, I sense that all members of that community are being treated fairly, equitable and respectfully then it gives me confidence that we would treat all other individuals in a similar manner.

Not all of us will get it right at all times – as I said we cannot walk in each others shoes. So sometime our divergent life experiences will mean we believe, say or do something that is unintentionally contrary to that which best affords respect to the LGBT+ community. However a curiosity in the colleagues you work with and an open dialogue leading to new learning will mean we all develop and grow more harmoniously as time goes by.

While ‘unintentional’ actions and statements are part of the learning process of complex societies, purposeful disrespect is never tolerable. So whilst our collective work is to improve harmony and respect through positive conversations about difference, similarity and learning, we must all stand together to call out purposeful disrespect to each other