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Life with a child with complex needs

My name is Jill and I’m mum to Noah who is 8 years old. He was born with a rare type of interstitial lung disease and following lots of investigations, Noah had a tracheostomy and was put on a 24/7 ventilator with oxygen. He is now only on the ventilator when he is asleep or is poorly which is good. Noah is also now under investigation with the euro team and a clinical geneticist, as they think Noah has further gene abnormalities and some brain damage. I also have another son Oscar who is 6 and is well.

I’ve broken down a few key areas to illustrate some main points:

Diagnosis – children like Noah often have a lot going on, they don’t fit into a ‘box’ and so no one really knows what to suggest – everything is trial and error. There are always further investigations and always other theories which sometimes are investigated and you build your hopes up for an answer, and often there isn’t one. This is really draining and exhausting to think that you’re getting somewhere and actually you’re back to square one.

I am a member of a couple of forums for parents of children with life limiting illnesses and a really common theme is that parents don’t truly feel understood by the general population. The only people that can truly know the horror of life in hospital where literally life is on the line and the medical traumas that we endure at home are people that have lived it – other people who have similar complicated children. Even other family members are often not told what is happening or that there are hospital appointments because everyone wants to say the right thing but there is no right thing to say, and then they try to understand and say something relevant but it ends up being something like ‘ have you ever thought that it might be to do with Hayfever’ and obviously it’s not, but I suppose they don’t know what else to talk about – so it’s better left unsaid.. which actually leads you into feeling more isolated.

Carers – We have a big care package for Noah. Every night overnight and during the daytime at school. I need these carers. I hate having people in the house, those that I wouldn’t choose as my friends ordinarily. I hate having to be fully dressed all the time in my own home because I don’t want carers seeing me with little on. I hate that sometimes I have nothing in common with them and we’ll sit around the kitchen table and actually have nothing to say. Imagine that – when you just want to sit and have your toast but you feel that you need to make conversation but there’s nothing at all to link the two of you. On the other hand carers have a huge impact on the lives of the boys – carers have this job to do but this is our life – a carer leaves and they ask ‘does she not like us any more, when can she come back, why did she leave? It’s such a hard balance. Also many carers find it difficult to include Oscar, my youngest, which leaves him feeling left out and sad. He is always saying that people don’t care about him. Even without carers I have be in the same room as Noah, and Oscar often has to fend for himself – he says it’s not fair – I agree with him – he’s drawn the short straw in many ways.

We’re ruled by time with carers – they always need to finish a shift on time which often cuts our plans short. We have to move mountains to get extra cover if my partner and I want an evening out together. When a shift goes down, I spend most of the day running around contacting people to see what shifts could be rearranged / who is working / free etc. I shouldn’t have to do this, it’s the job of our agency, however I do it quicker as it’s in my best interest to find a solution.

Competencies – they have to be done but Noah hates it – he gets scared when there is someone new practising on him. It’s not nice. Also on competencies days, there’s often 3 medical people around at the same time when I’m trying my best to get the boys ready for their day.

Professionals – some are great, and others are not. I deal with 54 professionals / departments and juggle them all along with running a house and running a company. I know what is happening with every aspect of Noah’s care, whether it be an issue with the EHC at school or the orthotics in his shoes, or that we have to do a sleep study at home. Fifty-four avenues of professionals that are great at their jobs but have no idea what’s going on with each other. This adds time pressure on the MDT / Team around the child, and meetings become less attended which is frustrating. When we were newly out of hospital, everything was very dramatic and unstable with Noah and around twenty people turned up to discuss his treatment and his care – as time has gone on, less and less people attend but Noah is still as sick, still the same diagnosis, still has emergencies.

-Jill, Service User and Carer

Carer vs Caring or a Caring Carer?

I am a non-professional carer for my daughter, twenty-four hours a day, seven days a week. Do you know that the dictionary definition of the word ‘caring’ when used as an adjective is: “feeling or showing care and compassion?” It’s also used by health and social professionals to describe a person or function. For example, nursing is a caring job. On the other hand, when used as a noun, ‘caring’ directly relates to the: “practice or profession of providing social or medical care.”

The problem I discovered is the fact that the “provision of social or medical care” significantly outdistanced the “care and compassion model.” This is because it’s based on the premise that an illness, frailty, disability, mental health problem or addiction could / should / will be “cured” purely by medical intervention, which can only be delivered by a professional Carer. Sadly, experience shows that simply targeting the medical condition in isolation and taking no account whatsoever of my daughter’s holistic needs often left her with low expectations, limited choices and diminished control over her own life. 

The “showing care and compassion” model, suggests that it’s not really the illness, impairment or difference at the heart of the problem. It’s the way that society organises itself to artificially create both physical and attitudinal barriers. This is all too often enhanced by the deliberate enforcement of poorly written, outdated, entrenched and often harmful, rules, policies, processes and procedures.  

The role of non-professional carer is open to anyone, from children through to the adults. All those who look after a family member, partner or friend who needs help and cannot cope without their support. It’s rarely a formal career choice, however, on the plus side, age and lack of qualification is no barrier! Mind you, there must be no throwing a sickie, no going home early, no time-out for holidays, what’s more – there’s no pay! 

Unfortunately, such a role is rarely recognised by health professionals. A recent Carers survey showed that over 70% of the 2,000+ carers involved came into direct contact with GPs, doctors and nursing staff during their journey. Yet the health professionals only acknowledged 11% as carers, whilst GPs only recognised 7%.

My experience as a non-professional shows that caring for someone outside of the hospital environment is a twenty-four hour a day, seven days a week commitment! It’s a role that doesn’t simply administer medications, enforce the inflexibility of “protected” mealtimes and the imposition of rigid house rules to treat the condition. 

So, my request to all health professionals, including GP’s, doctors, nurses and students is to recognise and embrace the issues holistically. Being a ‘caring carer’ involves all aspects of communication, information, inclusivity, flexibility, respect, dignity, compassion, connection, availability, as well recognition as a medical expert for the person you care for. That’s the definition of a “caring carer!”

-Allen Bewley, Service User and Carer

Mega Evento Nutriçâo 2019

Dr Julie Abayomi is the new Associate Head of Applied Health and Social Care, who started work at Edge Hill University in June 2019. Dr Margaret Charnley is an Associate Tutor for the nutrition programmes. This August they were lucky enough to be awarded funding from UK The Nutrition Society, to travel to Brazil and attend Mega Evento Nutricao 2019 in Sao Paolo.

‘We were greeted on arrival at Guarulhos airport by the Mega Evento organisers, Cláudio and his wife Sibele, with our workshop scheduled for the following day (Thursday 22nd August). Everyone was so friendly and welcoming, from Cláudio, to the interpreter Marco and the students who attended our sessions.  In the morning we presented a comparison of UK guidelines and Brazilian recommendations on maternal nutrition with guidance to the additional dietary requirements of vulnerable pregnant women. We also held a prize draw, to win 2 editions of the Nutrition Society Human Nutrition textbook, translated into Portuguese, the lucky prize winners were happy to pose for a photograph. In the afternoon we presented our research papers on the experiences and perceptions of midwives in delivering weight management and healthy eating advice to pregnant women with obesity and a Public Patient Involvement investigation into healthy eating and weight management advice during pregnancy, these were both positively received, generating lots of interesting questions.

On Friday (23rdAugust), we visited Sao Paolo University (, specifically their midwifery department (Obstetriz). This is the only midwifery programme for the whole of Brazil and it has been running since 2005. To date they have trained 388 midwives for a population of over 210,000,000 people, so plenty of work to be done. We met with the programme leader Professor Claudia Medeiros de Castro and nutritionist Dr Anna Karenina Azevedo Martins. We presented an overview of our research to staff and students; with lots of interesting discussion afterwards. Hopefully a very successful international collaboration will result from our visit. We would like to thank the Nutrition Society for their help, support and funding to allow this visit to be possible.’

Supporting young people at risk of violent crime or criminal exploitation

Sally-Ann Ashton is a Lecturer in the Psychosocial Analysis of Offending Behaviour and is involved with a project regionally to identify and support young people who are involved with or at risk of violent crime or criminal exploitation.

Dr Sally-Ann Ashton

Sally-Ann was awarded a Winston Churchill Memorial Travel Fellowship to research US gang interventions in July and August 2019. She began her research in Houston with Harris County Constable Precinct 1. She attended Crisis Intervention Training for officers and observed procedures in the Mental Health Division and the associated court processes.

Sally-Ann then travelled to Chicago to learn about restorative interventions with the Precious Blood Ministry of Reconciliation; she was able to speak to staff and young people who have been affected by gang violence. In Chicago she attended the National Gang Crime Research Center Conference; presenting papers on her research and involvement in UK gang interventions, and learning from a diverse range of Law Enforcement, Juvenile Justice and other practitioners for three days. She then attended training sessions for youth workers at Kentucky’s Department of Juvenile Justice and spoke to managers and teachers at a KDJJ day school to understand how young people can be supported through education. Returning to Houston, Sally-Ann then met with the supervisors from Precinct 1’s Juvenile Division and was able to learn about educational programmes for young people under detention. The fellowship was invaluable and has enabled Sally-Ann to bring a wide rangeof approaches and knowledge back to her work in the UK.

Nutrition futures 2019

Congratulations to Edge Hill University Nutrition student, Lesley, who presented her preliminary findings from her nutrition society funded project at nutrition futures event earlier this month.

Lesley interviewed nine farmers in total; six in South West England and three from the Northwest to explore their farming practices (past, present and future plans) in relation to food sustainability.

Children Coming to Hospital – what children want health professionals to know about coming to hospital for a procedure

In hospital, children may feel small, scared, worried or overwhelmed. The way health professionals engage with them makes a massive difference.

We worked with children and young people to create the ‘Children Coming to Hospital’ resource which includes a short animation for health professionals with practical advice about how to communicate with children coming to hospital.

Children told us they can struggle to join in the conversations with health professionals, as people often use words which are strange and unfamiliar to them. Children want to know that it is okay to ask questions to find out what is going on. They told us that it can help to have choices about what happens to them. Simple things like choosing which music to listen to or who sits with them while they have something done can make a huge difference to their experience.

The Children Coming to Hospital resource includes information for children, parents and health professionals. It aims to help everyone work together to make a child’s hospital experience as good as possible.

Children Coming to Hospital – Resource for children
Children Coming to Hospital – Resource for healthcare professionals
Children Coming to Hospital – Resource for parents
Children Coming to Hospital – Resource for parents

The Collaboration

The Children Coming to Hospital resource was developed collaboratively with children, parents and health professionals and working with the wonderfully creative guys at MisterMunro.

Once the resources were designed and made, it was important for them to reach as many families as possible so that they could hopefully use them to have a better hospital experience. This is where it is vital to work in partnership with hospitals like Alder Hey Children’s Hospital to help spread the word.

Lucy Bray worked with Steph Sinha from the pain team at Alder Hey Children’s Hospital to help create the Children Coming to Hospital parent leaflet.

We created the top tips by using up to date research and spending time talking to groups of parents across Liverpool about the important things to include. The leaflet is a key part of the Children Coming to Hospital resource as parents have an important role in play in supporting their child through a procedure.

Children Coming to Hospital

It can be hard for children to know what to expect when they come to hospital for procedures such as an X-ray or blood test. Children tend to have a better experience if they know what will happen and have the chance to prepare themselves. The ‘Children Coming to Hospital’ resource was developed with children, young people and parents by Lucy Bray, Bernie Carter and Ed Horowicz from Edge Hill University.

This engaging resource is made up of a short animation and comic strip for children, a short animation for health professionals and a leaflet for ‘parent/carers’. We hope the resource can help make coming to hospital a bit less scary for children. It also provides top tips for parents and health professionals on how to prepare and help children during the experience.

‘Children Coming to Hospital’ is free to download and use. The resource was launched in February 2019 and was highly commended in the British Medical Association Patient Information Awards.

The Student Quality Ambassador Programme (SQA)

The Student Quality Ambassador programme is an NHS North West Initiative for healthcare students to promote best practice and quality initiatives within the workplace, challenging the current standards of care. The programme runs across the whole of the North West, providing students from a range of different universities with the opportunity to role model and positively affect the quality of healthcare.

Students who are involved with the Student Quality Ambassador programme share best practice between them, and contribute to innovation through regular meet ups, supporting their peers in presentations, conferences and events. The programme forms a region-wide collaboration of Higher Education Institutions (HEI’s) and Service Providers to work with students with a focus on promoting their projects with care and compassion in the health and social care sector.

So what exactly does a Student Quality Ambassador do?

Previous Student Quality Ambassadors have been involved with a variety of projects to improve patient care. For example, the ’15 Steps Toolkit’, Audits, Mock Inspections and becoming Dementia Friends. But it doesn’t stop there! As a Student Quality Ambassador, students are provided with the opportunity to develop their own ideas from what inspires them. An example of this includes the ‘Are You a Veteran?’ project from one of our very own Edge Hill SQA’s.

Student Name: Karen Vernon
Project Name: Are you a Veteran?

Are you a Veteran? Is a project developed on the SQA programme by Mental Health Student Nurses, Karen Vernon and Natalie Matthews. Running alongside the organisation Veterans in Sefton, Karen and Natalie started working to implement and create awareness around Mental Health support services available to Veterans and their families.

Now leading on the project, Karen Vernon aims to involve Healthcare Professionals and further support services to stop and ask the question, ‘Are you a Veteran?’ during routine and emergency medical appointments. She hopes to develop a greater understanding of Veterans within the Health and Social Care sector, so that signposting and delivering care can be provided as best as possible.

This was demonstrated at a recent World Mental Health Day conference hosted at Edge Hill University, whereby Karen presented her project and signposted to relevant support services. Karen also facilitated guest speakers from Veteran’s in Sefton to speak at the conference about Mental Health in the Forces.

Karen’s goal is to raise awareness for Veteran’s Mental Health and work with healthcare providers to provide tailored support.

Karen Vernon (Left) and Natalie Matthews (Right) with Veterans in Sefton.

As referenced on the Student Quality Ambassador website, members of the SQA programme regularly engage the following:

  • Undertake practice based learning and feel empowered to champion and highlight good practice
  • Challenge areas of practice requiring development
  • Show leadership and motivation for themselves and other students, including being test subjects for innovations such as trialling the use of Standardised Numeracy Assessment Project (SNAP), Values and Behaviours assessment tools and e-learning projects
  • Work alongside and liaise between Practice Areas, Practice Education Facilitators, Higher Education Institutions, Students, Service Users/Patients and Carers, and further Professionals

So, are you up for the challenge?

If you’re a current Edge Hill student studying Health, Social Care or Medicine and would like to get involved, please click here to download the Student Quality Ambassador programme brochure and apply online.

National Fitness Day 2019

When we talk about exercise we usually refer to the physical health benefits: increased levels of cardiovascular fitness, muscle gain, fat loss etc. but what we often overlook is the impact exercise can have on our Mental Health.

Today (Wednesday 25th September) is National Fitness Day, and we’re focusing on celebrating the benefits that exercise can have on our Mental Health and Wellbeing.

🌟 Exercise makes us feel happier

When we exercise our bodies release endorphins, which are chemicals produced naturally by the nervous system. Endorphins create feelings of happiness and euphoria, which can boost our mental wellbeing!

🚨 Exercise can help reduce stress levels

Did you know that exercise can help manage mental stress? Norepinephrine is a chemical within the body which moderates the brain’s response to stress, and exercising can increase it’s concentration. This means that working out can actually reduce stress levels and boost the body’s ability to deal with existing mental tension.

🌙 Exercise can help us catch more Zzz’s

Physical exercise is tiring! And when we feel more tired at the end of the day we sleep better, and often deeper. Sleeping helps us to recover from mental as well as physical exertion, so making sure we catch enough Zz’s is super important!

💥 Exercise can boost brainpower

Cardiovascular exercise (such as jogging/rowing/dancing etc.) can create new neurogenesis (brain cells) and this can improve overall brain performance. Did you know that a challenging workout can actually increase your levels of brain-derived protein? Known as BDNF (Brain-Derived Neurotrophic Factor), this protein in the body is believed to help with decision making, thinking and learning.

So there you have it!

Exercising regularly can benefit our bodies in many ways – mentally and physically. So why not take today as an opportunity to head outside, enjoy the fresh air, and take part in #NationalFitnessDay 2019!

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