Retinoblastoma awareness

In World Retinoblastoma Awareness Week (#RbWeek), iHV supports the Childhood Eye Cancer Trust (CHECT) to raise awareness of retinoblastoma.

Retinoblastoma is a rare eye cancer that affects babies and young children, mainly under the age of six. Around 40-50 cases are diagnosed a year in the UK – or one child a week. It represents 3% of all childhood cancers and 10% of cancers in babies under the age of one in the UK. 98% of children in the UK with retinoblastoma survive, but early diagnosis is crucial to save a child’s eyes, sight and life.

Photo credit: Childhood Eye Cancer Trust (CHECT)

Over one in ten (13%) parents of a child diagnosed with the rare eye cancer retinoblastoma (Rb) in 2022 consulted their health visitor in the first instance. Health visitors were the second most consulted professionals after GPs for parents with concerns about their baby’s eyes.

However, according to the annual survey from the Childhood Eye Cancer Trust (CHECT), less than 30% of these health visitors recognised that the child’s symptoms were a sign of this rare condition.

The main symptoms reported by parents of children diagnosed with retinoblastoma are:

White glow seen in photos or in the eye itself – 77%
New squint – 33%
Change in colour of iris (coloured part of eye) – 9%
Loss of vision – 8%
Roaming eyes / child not focusing – 8%
Redness or swelling without infection – 7%
Absence of red eye in a photo – 1%

It’s important to note however that the symptoms are usually confined to the eye, and the child seems otherwise well in themselves, which can be misleading.

Richard Ashton, Chief Executive of the Childhood Eye Cancer Trust, said:

“Despite the extremely challenging environment many practitioners are working in currently, health visitors continue to play a hugely important role for parents of children this age. It’s important therefore that they are aware of the main signs of childhood eye cancer, and the appropriate action to take. This is why we have worked with the iHV to develop the Good Practice Points for retinoblastoma, and have a specific information on our website for health visitors at www.chect.org.uk/hv.”

Alison Morton, CEO of the Institute of Health Visiting, said:

“We are delighted to be working with the Childhood Eye Cancer Trust to raise awareness of the signs of retinoblastoma amongst health visitors and practitioners working in health visiting teams. Spotting the signs of this rare condition and ensuring that these children access the right treatment as soon as possible makes a big difference to their outcomes. It is therefore vitally important that all practitioners are able to spot these early signs and can ensure that families are supported with accurate information and advice.

“I encourage all practitioners to read our Good Practice Points resource which was developed in partnership with the Childhood Eye Cancer Trust and contains a wealth of information in an easy to access and quick read format.”

Go to GPP - Retinoblastoma (eye cancer in babies and children)

World Retinoblastoma Awareness Week takes place from 14-20 May 2023. Help CHECT to raise awareness with their downloadable resources.

For more information for health visitors on retinoblastoma, go to www.chect.org.uk/hv.

Updated GPP Postpartum Psychosis

During Maternal Mental Health Awareness Week, #MMHAW23, and following today’s theme of Health Care Professionals hub to support healing, we are delighted to share our updated Good Practice Points (GPP) on Postpartum Psychosis.

GPP – Postpartum Psychosis

Postpartum psychosis (PP), also known as puerperal psychosis and postnatal psychosis, is a severe illness that involves hallucinations, delusions, mania, severe confusion, or unusual behaviour occurring, often with acute onset, in the postnatal period.

These Good Practice Points set out what health visitors need to know about Postpartum Psychosis.

Authored by Dr Judy Shakespeare, retired GP, Royal College of General Practitioners Clinical Champion in perinatal mental health, and in association with Action on Postpartum Psychosis, this GPP provides up-to-date evidence and references.

Go to GPP - Postpartum Psychosis

Updated Vitamins resources now available

We are delighted to share updated Parent Tips and Good Practice Points resources on the importance of vitamins for babies and children.

Parent Tip – Vitamins A, C and D

In the UK, it is known that some babies and children have low levels of vitamins A, C and D. Vitamins and minerals help us to stay healthy, including babies and children. They also help us when we are ill.

This parent tip will look at each of vitamins A, C and D, explaining why they are important for babies and children.

Go to Parent Tip - Vitamins A, C and D

Good Practice Points – Advocating the use of Vitamin D

Health visitors have a central role to play in increasing Vitamin D uptake. These Good Practice Points, authored by Sara Patience, Registered Health Visitor, Registered Nutritionist, set out what health visitors need to know on advocating the use of Vitamin D.

They outline some evidence and guidance on the use and importance of Vitamin D, along with up-to-date evidence and references.

Please note that this GPP is available to iHV members only.

Go to GPP - Advocating the use of Vitamin D

If you’re not a member, please join us to get access to all of our resources.

The iHV is a self-funding charity – we can only be successful in our mission to strengthen health visiting practice if the health visiting profession and its supporters join us on our journey. We rely on our membership to develop new resources for our members.

So do join us now!

iHV GPPs for Down’s syndrome updated and ‘open access’

Thanks to generous funding from the Leieune Clinic for Children with Down Syndrome, the Institute of Health Visiting has updated, and made ‘open access’, its Good Practice Points (GPP) for health visitors supporting children with Down’s syndrome and their families.

People with Down’s syndrome have a genetic variation. Whilst they share some common features, it must be emphasised they are all individuals with their own abilities, needs, interests and aspirations. Down’s syndrome is not a disease and people who have Down’s syndrome are not ill.

The evidence base of what families with babies and children with Down’s syndrome value from health and related services has increased in recent years and should be acted upon in the design of services including health visiting. In November 2022, the iHV submitted evidence for the Department of Health and Social Care’s Down Syndrome Act 2022 guidance: call for evidence.

Colette Lloyd, Trustee of the Lejeune Clinic for Children with Down Syndrome, says:

“It is so important that all children, including children with Down Syndrome, are given the support they need to live happy and healthy lives from an early age. Therefore, we wanted to ensure that health visitors had access to the latest information on the additional support that children with Down Syndrome benefit from. We are delighted to partner with the Institute of Health Visiting to make these Good Practice Points available to all.”

There are two GPPs in this series:

The iHV developed these resources using co-production methods, with Down’s syndrome charities and parents with lived experience. As part of our scoping, families reported a postcode lottery of support – the quality of the service that they receive, and the skills of the staff that deliver it, really does depend on where they live. These GPPs are designed to address this gap by providing a summary of evidence-based information to support quality improvement in health visiting practice.

Like all children, children with Down’s syndrome are all different and will benefit from early intervention that is personalised to their identified needs. Personalised support should be in place as soon as the early signs are detected – for Down’s syndrome, this is likely to be at the antenatal screening when a ‘high chance’ of Down’s syndrome is detected. All parents are different and will respond to the diagnosis in an individual way. It is therefore extremely important that professionals take their lead from the parents. The Good Practice Points provide guidance in the specific areas of: growth, infant feeding, child development, managing minor illnesses, tailored support, and language/ terminology, as well as signposting to other resources for babies and young children with Down’s syndrome.

Go to GPP – Supporting children with Down’s syndrome and their families

Go to GPP – Supporting children with Down’s syndrome: growth, feeding and development

Updated resources

We are delighted to share 5 updated Parent Tips (providing advice for parents and families) and an updated Good Practice Points resource providing up-to-date evidence and references for our members.

Updated Parent Tips

(advice to share with parents and families)

Updated PT - Childhood Immunisations Part 1

Updated PT - Childhood Immunisations Part 2

Updated PT - Routine baby screening reviews at 6-8 weeks

Updated PT - Supporting breastfeeding for everyone and issues relating to breastfeeding during COVID-19

Updated PT - Coping with a crying baby

Updated GPPs

Please note that GPPs are available to iHV members only – do remember to sign in to access them:

Updated GPP - Managing childhood illnesses

Please note that GPPs are available to iHV members only.

If you’re not a member, please join us to get access to all of our resources.

So do join us now!

The vital role of health visitors in supporting families with SMA type 1

Health visitors play a vital role in listening to and supporting parents or carers when they have health or developmental concerns about their children. Health visitors also play a vital role in observing and detecting the early signs of complex conditions and disabilities in infants and children.

They are well placed to observe infants who may have Spinal Muscular Atrophy Type 1 (SMA Type 1) for example, which, although is a rare condition, is incredibly important to spot early as this improves the outcomes for infants.

We are delighted to launch our new Good Practice Points (GPPs) on SMA Type 1. The aim of this GPP is to support health visitors to recognise the early and important signs and symptoms of SMA, and optimise on all their contacts with young infants and their families. Early recognition is important as it speeds up the diagnosis and treatment which can make a significant and life-changing difference to outcomes and prognosis.

There are 3 very specific symptoms to be aware of in infants and these are:

An infant who cannot raise their head when on their tummy
An infant who has floppy arms and legs
An infant who is not reaching for things.

Health visitors should look out for these signs when reviewing gross motor development in young babies, and refer to a GP for review and referral to a Paediatric Neurologist if an infant presents with any of these specific symptoms. There is more information on SMA Type 1 and the other types of SMA in the GPP.

Go to GPP - Identifying, referring and supporting infants with Spinal Muscular Atrophy – type 1

We are grateful to our authors and funders for writing this GPP to equip health visitors. It originated from the awareness by Paediatric Neurologists of the vital role that health visitors have in early detection of SMA and the difference that their intervention can make to a young infant. We are currently working with our authors and will involve parents in creating a resource for parents and carers on SMA.

Click here for more information about symptoms of SMA Type 1

Calling all health visitors: We invite you to find your inner warrior and share your stories on social media. How have you made a difference to babies, children and families? Support the #TurnOffTheTaps campaign and raise the profile of health visiting so every baby can get the best start in life. Together we are stronger. #InvestInHealthVisiting

Find out more about the #TurnOffTheTaps campaign

Resources to support sexual health in #SHW21

In support of Sexual Health Week 2021 #SHW21 (14-19 September 2021), iHV publishes updated Parent Tips (PT) and Good Practice Points (GPP) and also reshares its recently published Interactive Parent Leaflet for Sexual and Reproductive Health.

Interactive Parent Leaflet for Sexual and Reproductive Health

This interactive leaflet will help parents think about having a baby and any questions they may have.

PT – Sex and intimacy: understanding changes to your sexual wellbeing following the birth of your baby

Having a baby is a major change in any couple’s relationship, with many parents feeling less happy in their relationship after the birth of a baby. This isn’t surprising, as a new baby means less sleep, extra work and less time for each other.

We know that this can lead to changes in a couple’s sex life, with one third of couples continuing to experience sexual difficulties up to four years after birth. Sex and intimacy is one of the issues that parents argue about after they have a new baby, but it is also one of the areas that gets talked about the least.

These parent top tips bring together a collection of evidence-based tips that new parents can put into practice today.

GPP – Talking with parents/carers about their sexual wellbeing

These Good Practice Points set out what health visitors need to know on talking with new parents/carers about their sexual wellbeing after having a baby.

Having a baby is usually a happy event, but it’s also a major transition for parents/carers, leading to changes in lifestyle and putting an understandable strain on the couple relationship.

Please note that GPPs are available to iHV members only.

If you’re not a member, please join us to get access to all of our resources.

So do join us now!

New Resources Now Available!

We have updated a couple of our Good Practice Points, that are now available on our website. We also have an updated Parent Tip for you to share and point your parents to.

Check them out below.

Our GPPs are just one of the great benefits all iHV Members have!

Not a member? Join us today!

GPP | How to reduce unintentional injuries in under 5-year olds

This GPP outline some key points in effective engagement with parents and guidance to reduce injuries along with up-to-date evidence and references.

See GPP Here

GPP | Keeping infants and young children safe around dogs in the home

This GPP sets out to support health visitors working with families where a baby or young child may be at risk of harm from a dog.

See GPP Here

PT | Sleep and the older child

Lots of things happen during sleep; babies and children grow, their brains develop, their bodies heal and repair, and their brains process the day. Children who are overtired in the long term can become more active and wanting attention, and this can be mistaken for not being tired.

See PT Here

Please note that GPPs are available to iHV Members only.

If you’re not a member, please join us to get access to all of our resources.

So do join us now!

New GPP: Promoting smoke-free families

On No Smoking Day 2021 (#NoSmokingDay 10 March 2021), iHV publishes new Good Practice Points (GPP) for health visitors – Promoting smoke-free families.

No Smoking Day is a national campaign that encourages the nation’s smokers to make a quit attempt on the second Wednesday of March each year. The day is an important opportunity to engage smokers in your local community, encouraging them to quit and access local stop smoking support.

Smoking is the single most modifiable risk factor in pregnancy. In 2019/2020, 10.4% of mothers were recorded as smokers at time of delivery. It is also known that pregnancy can be a time when parents are receptive to make changes to their behaviours.

There is no safe level of exposure to second-hand smoke. The best way to protect children from the effects of second-hand smoke is to not smoke during pregnancy and have a completely smoke-free home and car.

This GPP provides up-to-date evidence and references.

Go to GPP - Promoting smoke-free families

Please note that GPPs are available to iHV members.

If you’re not a member, please join us to get access to all of our resources.

So do join us now!

New GPPs – foot and walking development

In support of National Feet Week (#NFW 8-14 March 2021), we are delighted to publish two new Good Practice Points (GPPs) for health visitors.

Children’s feet should follow a typical pattern of development, however, these changes are often poorly understood by both parents and health professionals. Health visitors have an important role in helping parents to navigate this information and, to support you in practice, we have produced two new Good Practice Points:

GPP – Foot development in infancy and early childhood

Foot development is important. Changes in the shape, structure and function of feet occur throughout infancy, childhood and into late adolescence. During infancy (birth – two years old), there are rapid changes in foot size and shape. Health visitors should consider healthy feet as key to supporting infants as they begin to stand, learn to walk and explore their world. Understanding about how feet change in size, structure, shape is helpful to convey positive health messages and reassurance where needed

GPP – Overview of walking development in infancy and early childhood

Common concerns around milestones related to walking include whether the development is typical (or not), if the shape and development of the feet are correct, if the infant is walking correctly, and what types of shoes parents should buy to support their infant’s feet during early weight bearing. Through understanding the typical changes that take place during the early years, health visitors can advise parents, offer reassurance and refer for additional support and assessment when it is appropriate.

Also read great Voices blog by Stewart C. Morrison, Reader in Children’s Podiatry, School of Health Sciences, University of Brighton – Thinking about feet….

Please note that GPPs are available to iHV members.

If you’re not a member, please join us to get access to all of our resources.

So do join us now!