Shared Care Between Hospitals, Outpatient Clinics and Community Services.

If your child is receiving shared care between several hospitals or consultants or a number of different community care services, the following section provides advice and tips from parents about what to expect, how to prepare and how to remain organised.

What to expect…

  • Different services do not always have access to each others information about your child. You might need to bring information and reports from one appointment to another. You can also request that reports, test results etc be sent to different staff or services involved in caring for your child.

  • You often have to repeat your child’s medical history at new clinics or services or to medical personnel. This can be very frustrating. It can be useful to create a hospital passport or summary of your child’s health information to give to staff.

  • You might not be provided with a report or summary of meetings – make sure to take notes and ask for a report if necessary e.g. for applications for government supports.

  • You will need to be the voice for your child and advocate for supports on their behalf. Many resources and services are very stretched. It is important to follow up on referrals and waitlists and to push for supports.

  • It can be easy to forget what you want to ask at appointments. Write out questions to bring with you.

Advice from parents…

  • You will have lots of contacts! Save names and details of what they do and where they are located in your phone or a notebook.

  • Try asking one consultant to write an up to date, detailed letter about your child’s condition. You can bring this with you when visiting new healthcare professionals.

  • You are allowed ask to have your child’s medical chart and information copied or sent to you. You can ask the service provider or make a freedom of information request.

  • Before you leave an appointment, you might need to ask can you send follow up reports to other service providers. Have a list ready of other professionals who need this information.

  • Get some good A3 sized folders. File upcoming appointments, instructions on equipment, prescriptions, important letters etc.
  • Get good at using a calendar in your phone or on paper. Put everything in your calendar, straight away!

  • Find out who might be a good overarching contact – maybe a CNS, consultant  or your GP. You might want to have all reports from other services sent to them.

Understanding the community healthcare system

You may have been told that your child will need various supports in their community. Depending on your child’s needs, you may access a range of healthcare and disability services and specialised supports.

The information below provides information and links to additional information to help you understand the different roles and supports available.

Who you might meet…

General practitioners (GPs) are family doctors. GPs treat common medical conditions. They refer people to hospitals and medical services for other urgent or specialist treatment. Your GP can also assist with making referrals to community, respite and home care supports and completing forms for a range of government supports.

They are one of the primary care services your child might receive.

Tip: If your child is receiving care from a range of services and supports it can be a good idea to ask that any reports and test results are also sent to your GP.

Public Health Nurses provide a range of healthcare services in the community. They are usually based in your local health centre and are assigned to cover specific geographical areas. Public Health Nurses sometimes provide aftercare to people who have been discharged from hospital.

They are one of the primary care services your child might receive.

The Public Health Nurse can help you understand the supports available and can make referrals to a range of services.

You can contact your local Public Health Nurse through your local health office

Health and social care professionals provide a range of specialist services through hospitals or community care services. You might meet them as part of hospital care, primary care, disability services or other services.

They include:

  • Audiologists
  • Dietitians
  • Occupational therapy
  • Play therapy
  • Physiotherapy
  • Phlebotomy/blood testing
  • Psychologists

and many more specialist services.

Some children may receive support from a Complex Care Coordinator to help manage their care in the community and at home. They also help coordinate home care packages.

This support may be provided for children with certain conditions or with complex healthcare conditions and who receive care from numerous services in hospital and in the community.

You may be connected with these teams as part of hospital discharge planning.

The Clinical Nurse Coordinator for Children with Life Limiting Conditions facilitates care for children with life-limiting conditions in collaboration with health care professionals within the hospital, in community settings and at home. They link with services in the families area such as Public Health Nurse, GP, Disability Services, Community Palliative Care Teams, voluntary organisations and schools.

Referrals can be submitted by any healthcare professional.

Not every child with a life limiting condition will be linked with a Clinical Nurse Co-Ordinator. Your child may be referred for reasons including:

  • If they have unpredictable or deteriorating health.
  • If there are frequent unplanned hospital admissions.
  • If they need a lot of support around symptoms that are a challenge.

Click here for more information

How care services are organised in your area..

Health and social care services are organised through various teams and networks in each area. It can be useful to understand how this works if you are trying to find services in your area or wish to make a complaint.

The section below will help you understand how most services are organised and overlap.

Primary Care is all of the health or social care services that you can find in your community, outside of hospital. It includes GPs, Public Health Nurses, Physiotherapists, Occupational Therapists, Speech and Language Therapists, Home Care Services and much more.

Depending on their needs, your child may access Primary Care services through the Local Health Officer or through the local Children’s Disability Network Team (CDTN).

Your local health office or health centre is your entry point to primary care and other community services. You can find your local health office here.

Your Local Health Office is your entry point to community health and personal social services. The wide range of services that are provided through Local Health Offices and from Health Centres include general practitioner services, public health nursing, child health services, community welfare, chiropody, ophthalmic, speech therapy, social work, physiotherapy, occupational therapy, psychiatric services and more.

Your local health office or health centre is your entry point to primary care and other community services. Your child’s needs may be met at your local health office/health centre or some children with more complex needs might need to see a Children’s Disability Network Team (CDNT)

You can find your local health office here

Children’s Disability Network Teams are for children aged from birth to 18 years who have complex needs, and their families. A child has complex needs if they have a range of difficulties which need the support of a team of professionals who work very closely together. There is a Children’s Disability Network Team for every part of the country – over 90 teams.

CDNTs address the needs of children with a wide range of disabilities and health conditions including intellectual disability, physical disability, sensory disability and autism.

A child’s access to CDNT services will be based on their needs, so a diagnosis is not required to be referred to a CDNT.

CDNTs typically include the following on their team: Occupational therapists, Psychologists, Physiotherapists, Social workers and Speech and language therapists. CDNTs may also have access to: Behaviour Support Specialists, Clinical Nurse Specialists (CNS), Dietitians, Early Educators and Therapy Assistants.

You can find more information about CDNT’s here

You can find contact details for your local CDNT here.

Most CDNT’s have a website or page – google the name of the CDNT for your area to find their website. Each CDNT is part of the range of health and community services available in communities in Ireland which also include primary care, social care mental health and disability services. These are grouped together into nine Community Health Organisations

Many support services are provided by voluntary organisations or charities, on behalf of the HSE (HSE funded).

These organisations also provide services directly to children and families, separate to HSE services.

Some voluntary organisations are part of the Children’s Disability Network Team in an area.

You might receive support directly from various HSE staff and also from one or more voluntary/charity organisations.

Community Healthcare Organisations (CHO’s) are the 9 administrative groupings of how services provided outside of the acute hospital system are organised.

  • Primary Care services
  • Disability services and Children’s Disability Network Teams
  • Mental health services
  • Social care services

Ireland is divided into 9 Community Healthcare Organisations (CHO) and each CHO has many Primary Care Networks and Children’s Disability Network Teams.

It can be useful to know which CHO you are in if you need to make a complaint about HSE funded community services in your area.

Click here for a map of the CHO’s in Ireland.

Click here for complaints officers for the CHO for your area. This covers primary care, disability, mental health and other social care services.

Why can help you understand community services?

Your GP or Public Health Nurse are often your first point of care with different community services. They can support with advice, referrals and information.

Various members of your child’s hospital care team can help you understand the community supports your child might require. The staff involved will depend on your child’s health condition. Staff might include nurses or clinical nurse specialists, hospital discharge team, medical social workers, care coordinators, and other staff providing care for your child.

Condition Specific Support Organisations/Charities
Condition specific organisations may be able to provide you with information about community supports and services specific to your child’s condition. Some of these organisations provide services on behalf of the HSE. Search our database for a listing of some of the Irish organisations that may be able to provide advice and support.

Parent Groups
Parents have told us that parent groups on Facebook etc can be very useful for asking questions and seeking advice from other parents in similar situations. Make sure to clarify information as every situation and family is different.

Some community based services are provided by charitable organisations with or without funding from the HSE. These national organisations also provide advice and information to families.

There may also be regional organisations providing support and information in your area.

The Citizens Information Bureau provides useful information to help you understand Children’s Health and Disability Services.

You can also visit their local office or contact them by phone for advice.

Equipment and Accessibility supports…

Your child may require a range of aids, appliances and devices to help in daily living and or for condition specific care at home.

If your child receives Domiciliary Care Allowance, has a medical card or is covered under the long term illness scheme, these items
might be provided by the HSE with a referral. Some families may purchase these items privately and might be entitled to tax relief
or have coverage from private health insurance.

The HSE provides medical and daily living aids and appliances free of charge to children receiving Domiciliary Care Allowance, medical card holders and people on the Long Term Illness Scheme, with a referral. If you do not have a medical card for your child, you may still be provided with such aids and appliances for free if they are part of hospital treatment they are undergoing. A health professional will undertake a needs assessment of the service user to identify any equipment requirements. To find out more contact your GP, public health nurse or Local Health Office, or other community care professional or organisation you are connected with.

The HSE has an an information page for medical professionals but it can be useful to understand the aids and appliances available under this scheme. Getting the aids/appliances your child needs is not always straight-forward and you will need to make sure to follow up on referrals and to push for what your child needs.

While many aids and appliances are provided by the state, some families may also purchase items privately for various reasons. Some expenses  may be covered by private health insurance.

To find out if particular equipment, aids or assistive devices are covered by your insurance plan:

  • Contact the insurance company and request a list of approved devices.
  • Ask about the level of reimbursement they are entitled to.
  • Ask about the particular details related to the companies coverage of particular aids or appliances e.g. excess, wheelchairs, limit on number of outpatient devices you can claim.
  • Some insurance companies will cover the cost of approved devices on a case-by-case basis. Those covered by private insurance may also be subject to a limit on the number of outpatient devices they can claim.

Useful Information: See the Housing, Transport, Aids and Equipment section in our Government Supports and Entitlements page for additional information and to understand tax reliefs available on certain expenses.

Homecare and Respite Services

Depending on your child’s illness or disability you may require support services such as homecare or respite services These services may be provided directly by the HSE or on behalf of the HSE by charities or private companies, or you might get these services directly from charities or private organisations.

Your healthcare team should help you understand the supports available for you and your child at home.

Charity supports for children with complex or life limiting health conditions.

2023-10-27T11:52:02+00:00 || 01 2893151

LauraLynn provides specialist palliative and supportive care services to meet the needs of children (0-18 years old) with life-limiting conditions and their families in Ireland. LauraLynn provides care for the child while also supporting the whole family with targeted supports available to siblings, parents, grandparents and more. Care can be delivered at the hospice building in Dublin or in the family home with the Care in the Community Team providing care and supports in children’s homes across Leinster, Cork, Kerry and Limerick.

2023-09-28T09:19:42+00:00 || 045 894 538

Jack and Jill provides in-home nursing care and respite support throughout Ireland for children up to the age of 6 with severe to profound neurodevelopmental delay. This may include children with brain injury, genetic diagnosis, cerebral palsy, and undiagnosed conditions. Another key part of their service is end of life care for all children up to the age of 6, irrespective of diagnosis.

Feedback and complaints

See our Feedback and Complaints page for information about how to make a complaint or provide feedback on a service you have received from hospital or community services.

Feedback and Complaints
Hospital and community services