Lancashire Teaching Hospital | NICU

We undertand that having a baby on the Neonatal unit is an incredibly stressful and worrying time and this can affect families emotionally and financially both from admission and beyond.

Within each section you will find NHS organsiations and charity organsiations that can offer support and guidance within this difficult time and our team are here to help you at every oppotunity.

Support the entire family

The impact of having a sick baby on the Neonatal Unit can impact the entire family, the following organisations may be able to offer a range of support for parents, siblings and grandparents. Please discuss with staff any family support you feel you may need and we can look at placing in a referral. We can also utilise our excellent paediatric play team in special circumstances to come to the unit to support siblings - please click on logos to be directed to the websites.

The Rainbow Trust - Supporting families with a seriously ill child

Family Support Hub

Derian House - Supporting families with a seriously ill child with counselling and sibling support

Kentown Support - Community focused children’s palliative care initiative in North West

Additional information is available on BLISS - Parent Support

Having to explain to younger children that their brother or sister is in the neonatal unit can be very difficult. The following videos are a great way to start convserations with young children and explain premature birth.

It's a Boy! No Wait, it's a Girl! | Early Baby | Bluey
In this epsisode of Bluey, Bluey and her friend role play that her baby is 'coming early' and being cared for on the NICU.

My very little sister and the very big story
Written by Alina when she was 5, she desrcibes her neonatal journey with her younger sister, an excellent resource for siblings

Additional information is available on the Miracle Babies Foundation's 'Supporting siblings' page.

Information for support for LGBT+ families is available on Bliss
Financial support
Having a baby on the Neonatal unit can lead to unexpected financial costs such as having to take unpaid leave, commencing maternity leave earlier than expected and travelling costs coming to and from the hospital. Our family support worker will connect with you during your time on the neonatal unit and will support and guide you with housing and financial concerns.

The Trust will support you with free car parking, accomodation for out of area parents, meal vouchers for breastfeeding and residing parents and refunding of appropriate travel costs,

The following organisations can provide support and guidance - please click on the links below to be redirected to the relevant websites.

Bliss - Advising families of what they are finanically entitled too

Citizens Advice - Benefits advice

Together for short lives - Advice and help for families caring for a child with a serious illness

Turn2Us - Financial advice

Family Fund - Helping families of sick of disabled children

Is your child 5 days old?

Still receiving Intensive or High Dependency Care?

Or being discharged home with continuing specialist care?

If so, you could be eligible for a Hospital Service Grant

Which grant programmes are available?
Family Fund provides a wide range of grants to families living in England raising a disabled or seriously ill child, or young adult on a low income. Apply for items that will help meet your child’s additional support needs and make life easier.

Are we eligible?
To decide if your family is eligible for a grant, Family Fund looks at your income and the impact of disability on your child.Their grants are available for families on a low income who are raising a child or young person with a long-term disability, disabling condition or life-limiting illness. Their grants also depend on available funding. As the child’s main carer, you will need to have lived within the UK for six months or more.

Your Income
Family Fund supports families on low income from working or benefits. You are likely to be eligible for a grant if your family’s main carer receives one of the following:
- Universal Credit
- Child Tax Credit
- Working Tax Credit
- Income-based Jobseeker’s Allowance
- Income Support
- Housing Benefit
- Pension Credit
PLEASE ASK THE NEONATAL STAFF FOR AN APPLICATION FORM

Visit familyfund.org.uk for more information on available grants and support
Psychological support
The Neonatal journey has often been described as an emotional rollercoaster and families can experience a range of emotions which can be confusing, frustrating and sometimes overwhelming. The most important message we can tell you is that all these feelings are natural reactions to being placed in stressful, emotional and distressing situations. It is incredibly important that we are open around the potential impact or exacerbation of current mental health conditions such as anxiety, depression, post natal depression and post traumatic stress. Common stressful themes that parents have identified are:
- Anxieties around risk or an unpredictable prognosis in pregnancy
- The trauma of an unexpectedly early or complicated delivery
- The challenges of immediate separation from baby
- Adjustment to the parental role within a neonatal setting
- The infant’s appearance and signals associated with prematurity
- Baby’s complex and flucturating medical status
- Environmental stresses such as machine sounds (and the risk implicit in these)
- Communication difficulties with staff – including a sense that staff are not aware that situations, which are routine for them as professionals, are often stressful and bewildering for parents
- Separation from baby or other family members, travel and the practicalities of living apart (NFAST 2021)
We want you to know you are not alone and we are here for you to guide you, support you and signpost you to the appropriate services that can help, all we ask is that you please keep talking to us - Click on the links below to access the information available on each organisation's website.

Lancashire Teaching Hospitals NHS Foundation Trust - Perinatal Mental Health Support

Lancashire Teaching Hospitals NHS Foundation Trust - Birth Afterthoughts

Reproductive Trauma Service

Neonatal Network North West's 'Hey It's Okay' information document

Pandas Foundation

NHS UK - Better Health - Every Mind Matters

Lancashire Women

Lancashire Mind - Urgent Help

Dads Matter Too

It can often be that allot of the professional focus can be placed on mums following the birth of a baby but it's important that we do not forget about dads and partners during the neonatal journey and the impact that this can have on mens mental health. Quite often dads/partners do not feel that they warrant any attention because they have not given birth or are expressing or breastfeeding and that their thoughts and feelings do not count but this can not be further from the truth. Research shows that dads/partners can experience depression within the first year of a child being born. We want you to know that we are here for you also and if you have any thoughts or feelings you want to discuss then please come and speak to us. The following websites and organsiations can also provide support and guidance. You can find out more about each organistion below by clicking on it.
Charities
Apps
Local Support Group
- NeoMates UK
Neomates was established in 2019 and aims to meet the need for on-going support and social interaction for families and babies who had spent time on the Neonatal Intensive Care Unit. It’s coordinated by Paula Carrig, our Patient Experience Advisor and Louise Richards one of our neonatal outreach nurses.

The group provides practical, financial and health advice, babies can be weighed and checked over to promote the babies wellbeing and increase parent’s confidence. Other health professionals are invited to the group e.g. Speech & Language, Breastfeeding specialists, Occupational Therapists and Physiotherapists, providing additional support and advice.

Neomates is held at River Bank Children's Centre in Preston on the first Wednesday of each month.

Please consider following Neomates on Facebook: https://www.facebook.com/groups/NeoMatesPreston/
Bereavement support
It is always with the heaviest of hearts that we appreciate the neonatal journey does not always have the happy ending parents and families envisaged and this may be why you have found youself searching for answers within this section.

As a family you may have just received the devastating and often over whelming news that your baby has a diagnosis of a life-limiting or life threatening condition / illness and it may be that there is:
- An uncertainty over your babys survival as the team work extremely hard to provide curative treatment or there may be no curtative treatment available and your baby may require ongoing palliative care for an extended period of time
- You may have also learnt that your baby's life may be nearing an end as all curative treatment has been exhausted and the team have discussed the withdrawal of non-essential drugs or other invasive interventions.
As a team we acknowledge your pain and heartbreak and we hope that the information provided offers you support and guidance for yourselves and your family through this difficult time.

Making difficult decisions

As parents you are the experts in your baby’s care and it is imperative to us that we work in partnership with you as a family to ensure you feel fully informed, encouraged and supported and that the best interests of your baby are at the heart of everything we do.

We will always provide you with clear, concise information at regular intervals and remain open and honest with you regarding your baby’s care and condition. Through our experience, knowledge and available services, we will support and guide you through any decisions that are required to be made and we encourage you to talk to us and ask questions at every opportunity.

Reorientation of care

Every baby and their families are unique and baby's care and families needs can change, sometimes quite rapidly dependent on a baby's illness / condition, therefore we ensure we are continually assessing and communicating with families as a whole to adapt care and support as needed.

When a baby's illness / condition is diagnosed as uncurable, care will gradually transfer from curative to supportive and this is known as Orientation of Care in which care priority will always focus on ensuring baby's are pain free, comfortable, their symptoms are managed and baby's quality of life is central to all decisions made. Multiple teams and services may be involved in a baby's care at this stage to ensure baby's and families needs are met and supported in the environment that the family choose. A multi agency approach when time allows can also guide and support families in planning ongoing palliative care alongside end of life care placing families in control of their baby's life journey.

Advanced Care Plans are formal care plans created with parents, the medical team, agencies and services involved to promote seamless communication and ensure families are supported at every opportunity. The plan will include details reagrding the baby's condition and the decisons and wishes of the family including limited or non resuscitative measures and the families chosen end of life location, where parents feel most comfortable, be that in the hospital, home or within a childrens hospice.

It is very important to acknowledge that prognosis and end of life may suddenly and unexpectedly occur and there may be very little time to plan, however through informing and communicating with our families we can work together to deliver the individualised care and wishes for baby's and their families.

Siblings, grandparents and extended family

We acknowledge that this is an extremely difficult time not only for yourselves but also for your baby’s siblings, grandparents and your wider family network. Open access to the Neonatal Intensive Care Unit is available to enable close family to access the unit and we will support you all as a family.

Breaking bad news to your other children and family can be extremely difficult and our family support worker, local childrens hospice teams and our nursing team will support you through this process. Our medical and nursing team can also update any family members regarding your baby's condition and planned care, at your request and with your consent.

For further information and guidance you can also visit the following organisations listed below:
Childrens' hospices

As a Level 3 Neonatal Intensive Care Unit we care for babies and families all over the North West and beyond who require our specialist services, we will always enage with your consent and wishes with your local childrens hospice to ensure baby's and families have the right support close to home - Click on logos to be taken directly to the website

Derian House
derianhouse.co.uk

Derian House Perinatal Team helps families living in Lancashire, South Cumbria and Greater Manchester and enables a smooth transition to the destination the family choose for their baby's care and they offer support and guidance to the family as a whole. They support palliative care measures and offer short respite breaks and they have their own sunflower room and family flats on site for end of life care and have access to specialist reorientation and end of life care nurses and 24/7 on call services if you wish to go home with your baby and will also work with the neonatal and paediatric team for care within the hospital setting. They offer immediate holistic care, emotional and practical support and guidance and ongoing support which can include telephone contact and group sessions for parents, grandparents and siblings or counselling support for any family members.

Brian House Children's Hospice
brianhouse.org.uk

Brian House Children’s Hospice is a charity that supports families on the Fylde Coast and offers nursing, practical care and management of symptoms, short respite breaks and bereavement support to families. Their Butterfly Suite provides a private and peaceful bedroom, lounge and garden - a place for families to take time to say goodbye to their baby after they have passed away. Private accommodation is available for families to stay, if required. Bereavement support continues for as long as it is needed and counselling can be provided if you feel it would be helpful.

Hope House Children's Hospice
hopehouse.org.uk

Hope House supports families living in Shropshire, Cheshire, Mid and North Wales and Claires House supports families living in the Merseyside area and both offer respite care, end of life care and immediate care after death, bereavement counselling and support for all the family.

Claire House Children's Hospice
clairehouse.org.uk

Making memories

The time parents spend with their baby may be short and every moment spent together is precious. Creating and making positive memories is a beautiful keepsake and remembrance of a baby’s life, as a team we support families to hold their baby, have skin to skin and as a family collect photographs, hand and footprints and precious items belonging to their baby.

We have multi faith memory boxes on the unit which are a beautiful holder of very beautiful memories.

As a team we acknowledge and respect everyones cultural beliefs and rights and we will work with our families, our trust and families own multi faith pastoral carers to carry out their wishes and cultural practices around end of life and after death care, wherever possible. We have multi faith prayer rooms allocated within the main hospital and our pastoral team are available at families request to perform naming ceremonies, Blessings and Christenings.

We have 2 bedrooms located on the neonatal unit, a family suite located within maternity and accomodation onsite where parents can stay and be close to their baby during very stressful and uncertain times. We will always ensure that families have precious time alone with their baby following their baby's passing and they can stay with their baby for as long as they wish. Following a baby's death our midwifery bereavement team will come and introduce themselves at a suitable time for our families and will guide and support them with registration, organising their baby's funeral, financial guidance and support, bereavement support and counselling and maternal postnatal care.

Here are some links to websites that parents and families have found very helpful during this difficult time:

NICU - Family Support

Dads Matter Too

Making difficult decisions

Reorientation of care

Siblings, grandparents and extended family

Childrens' hospices

Making memories

Get in touch

NICU - Family Support

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