Who is this service for?

The young adult palliative care service is for any young adult aged 16-24(we take referrals up to 25th birthday) who has a life limiting condition like cystic fibrosis, heart failure, or Duchenne Muscular Dystrophy and are unlikely to live as long as their peers, or a life threatening condition like cancer, where there are potentially curable options, but these treatments may fail.

We can take referrals for the Young Adult Palliative care service at any stage in your illness. This could be just after diagnosis, if you feel you need some support around your options or your fears/worries for the future.

This could be during your illness/treatment, when maybe things are not going as well as you hoped, or you feel worried for the future.

It could be following a relapse of your disease or a progression despite treatment when things feel very uncertain.

Or following the news that treatment hasn’t worked and future options of treatment are limited, or unlikely to work or your illness is progressing.

There is no right or wrong time for referral, its when it feels right for you.

Some people worry that if there are referred early, it will mean active treatment options won’t be explored fully, or that the referral will ‘jinx’ the outcome of their planned treatment. This is not the case. We are here to support you through the good and the bad. We will celebrate your ‘wins’ with you, and we will be here to support you through any setbacks. We will always remain hopeful alongside you, and if your treatment is successful, we will celebrate with you.

You may need further support following completion of treatment and adjusting back into normal life, or you may not need any further support. All these options are okay, and a part of the work we do. The service is not just about end-of-life care.

We will meet with yourself and the people most significant to you. This could be your parents, a sibling, or may be your partner/spouse or your best friend. Or a mixture of all of these. We are based in the hospice, but work across the hospice, hospital and community settings, so can see you wherever is best for you.

We aim to build supportive relationships with you and the people closest to you to guide you through your treatment journey and/or palliative and end of life care. The support you need is likely to vary over the course of your illness. There may be times when things are going relatively well, and you need very little support. This is okay. During this time, we may swap the odd text and not much more, but we’re always at the end of the phone if you need us.

What services can I access?

There is a range of services you can access – see below. You can access as many or as little as you like. Not all may be appropriate to you, so you can pick the ones that feel right. You can choose to access more, or less, over time.

Sometimes the way treatment makes you feel can be really tough. We will work alongside your current medical teams with the aim to try and minimise any symptoms, or to manage them as much as possible. As we are community based, we can visit you at home to assess symptoms and hopefully prevent some admissions into hospital. We work alongside your GP and can prescribe or titrate medicines and so hopefully can provide more timely symptom control.

Even for the young people who we can’t make better, our aim would always be to try and make them feel better, and to help them feel as well as they can for as long as they can.

We can talk about the things that are important to you and what you hope to achieve both during treatment and beyond. It sometimes helps to have goals to work towards to get you through tougher times. If some of your goals need to be put on hold for treatment, we can support you through this and help to develop new, more achievable goals, for the short term.

If due to your condition it is likely that time will be limited, we can help you with bucket list ideas and things you want to do whilst you are well. We have a small fund we can use to help you create lasting memories with your family and loved ones.

Some young people like to think about things they can make or create to leave for their loved ones after they have died, and we have some ideas and funding to help with this.

Some young people are planners and feel better talking through all potential outcomes of their care, others would rather only face each scenario as it happens. There is no right or wrong, only what is helpful to you.

An advanced care plan is an optional document where you can record what you want in certain situations. There is no pressure to complete one, but some young people find them helpful and a way of ensuring their voice will always be heard in all aspects of their care. The plan can include your wishes and requests for when you are well, for when you’re having treatment, and also for if things don’t go as well as we’d all hoped. Some young people complete all the plan, and others only do certain sections. The plan is not set in stone and can be reviewed and added to at any time if things or your feelings change.

Kate is one of our Complementary therapists that works with our young people and their families/partners. She offers a whole range of treatments, from relaxation therapies to therapies that are targeted towards a certain symptom. She specialises in techniques to try and reduce anxiety. The therapies can be delivered at either Claire House Wirral, Claire House Liverpool or in your own home.

Sarah is one of our Physio’s that works with our adult colleagues to provide a physiotherapy service for our young people. She can visit you at home and give helpful support and advice around symptoms such as pain and those associated with breathing. This support may be in the form of  breathing techniques, positioning, acupressure, TENS, aquatic therapy, positioning, moving and handling advice/education and use of mobility aids.

There is a social group that runs once a month out of Claire House Liverpool (just off Honeys Green Lane). This is for young adults aged 14-25 that have been referred to Claire House. Its very informal and usually involves video games and take aways! You are more than welcome to attend and talk to other young people who are maybe in a similar boat to you.

We have a Family Support Team that can accept referrals for you, or for any member of your immediate family for counselling if needed. They are used to working with young people, parents and siblings, and this support can be available throughout treatment and beyond.

If you access this service as a young person, a member of the team would meet with you to discuss your emotional needs. Following this you will then be allocated a Therapeutic Support Worker or Counsellor who can work confidentially with you in many different ways to support you to share any worries or concerns you may have. Our Therapeutic Support Workers and Counsellors are able to work with you by simply sitting and talking together in a quiet space, playing games together or through art & craft activities.

We also have a Music Therapist called Wendy, who can work with you in a number of different ways. From instrument playing, to song writing and playlist curating, Wendy encourages your creativity and offers a safe space to be yourself and release some of your difficult thoughts or feelings.

During Music Therapy you can get your hands on a range of instruments and technology, including keyboards, electric drumkits, guitars, iPads and recording equipment. You do not need to know how to play already – Wendy will help you use these to create the sounds and music that express who you are and how you feel.

We offer a wide range of support to siblings, including fun social activities days with other similar aged siblings. In the past we have arranged trips to Alton Towers, to the cinema and for pizza, or Ninja Warrior activity days for example. For younger brothers and sisters we hold annual events such as our Easter Egg hunt or a fun Party Bus experience. We also run residential events where we take a group of brothers and sisters away for a few days to do lots of fun indoor and outdoor activities. This is a great way for siblings to make new friends who are experiencing similar difficulties in their lives.

Sometimes, brothers and sisters need some dedicated time just for them where they can access therapeutic support. Often siblings will work with a Therapeutic Support Worker or Counsellor to create memory boxes or memory sand jars. We also have resources we can share with you and your family to help you guide your way through difficult conversations with siblings, if they are struggling to understand what is happening to their big brother or sister.

Our Family Support Team offer a wide range of bereavement support that can be accessed by any family member following referral. This includes regular and confidential one to one sessions with a Therapeutic Support Worker or Counsellor, or we can offer access to one of the many therapeutic bereavement groups. These include Mum’s groups, Dad’s groups, mixed parent groups, grandparent groups. We are open to creating new groups where there is a need for this and our groups can be accessed at any point in the bereavement process, even many years post bereavement. Every year in September we hold a special Memory Day event, and in December we welcome families to come and join us for our beautiful ‘Light for Love’ evening. We also offer a variety of social workshops where family members can come along to learn a new craft, learn how to journal or simply come and have a complimentary therapy and meet other people experiencing similar difficulties in their life.

Sometime our young people sadly need to be referred for end of life care. This may be because treatment has failed and there are now no curative treatment options available, or because they have a life long condition that is progressing and they are becoming more poorly.

It is important during this time that we know what is important to you and you have choices in what happens next. During this time the Young Adult Palliative Care team work closely with our adult palliative care colleagues, to ensure you are given options e.g. place of care, and have a multi-disciplinary team around you.

This may be a mix of ‘young adult’ and ‘adult’ professionals to ensure you get the very best care in your place of choice.

This can be in hospital, if you have good relationships with your treating teams and you feel most comfortable and supported there.

This could be in a hospice if this feels better to you; either a child/young adult hospice like Claire House, or an adult hospice like Wirral St Johns, Woodlands, Marie Curie etc., depending on the area in which you live. We work closely with our local adult hospices and can support you to look at both options, and see which ‘fits’ best for you.

Or this could be at home with your family and friends around you, with collaborative teams that work across the hospice and community settings supporting you.

All of these choices are options you could consider, and know that as a young adult team, we would continue to support you in all of the settings.

Why a young adult Palliative care service?

We absolutely recognise that you are an adult, but we also realise that it can sometimes be scary to be treated as one when you are dealing with a serious illness.

You may have had a lifelong illness, and your parents have always had a huge say in your care or decision making, and you like it that way.

It may be that you have always appreciated their support, but are ready to take the tentative steps towards being more vocal in your own care.

Or it may be that you have a new diagnosis, and you need your parents support and presence more than anything.

Whatever your situation, we understand that you may want to be treated differently at different times. We will promote family centred care for you, when you need a parent around you. We will help you navigate your illness together, and ensure your parents are supported. But we can also help your voice be heard and give you the opportunity to ask questions independently of parents should you need to. We will help you process the information you are given and encourage you to voice your concerns and wishes.

How we work with our Adult colleagues

You may have already met some of your community team, which can include many professionals from GP’s to District Nurses to Specialist Community Palliative Care Nurses. Our role is not to replace these services but to work alongside them to add extra layers of care.

These professionals are very experienced and provide very high levels of care to all adults who require palliative care. This includes young adults. However, the majority of their case load are older adults, and some areas or teams may only see a few young adults each year.

Therefore, as we deal with lots of palliative young adults, its good to get both teams together to make sure you get the benefit of everyone’s experience.

After we have received a referral for you, we will get in touch with your existing team and plan how to work together. We are used to working collaboratively and so have good communication strategies to ensure you are not bombarded with professionals. Depending on your existing relationships with these teams, you may need a little or a lot of support from the young adult team. We can talk through what feels right for you.

We also work closely with our local adult hospices. So again when we receive your referral, we will inform your local adult hospice and accept the referral jointly. This doesn’t affect you directly, but means if you ever needed hospice support going forward, you will have a choice of a child/young adult hospice or an adult hospice.

How do I self-refer to the service?

Just visit and complete our Referral Form.

This can be completed by yourself, or someone on your behalf, like a parent or a partner. They just need to have your consent to do this. You may not have all the information requested on the form, but this is okay. We will just need your permission to talk to your professional teams to get it.

Alternatively you can talk to one of your professionals and ask them to do it. They will have easy access to all your medical information and can complete the form. Again, they will just need your permission to do so.

If you are not sure if the referral is appropriate, or if you fit the criteria, that’s okay. Submit the referral and we will assess it. Even if you don’t meet the criteria, that’s okay, we can always signpost you to the most appropriate service to help you.

Information for professionals

We recognise that young adults, aged 16-25, are a distinct cohort of people with a wide range of needs. They are just beginning to mature as an adult but can be a short or long way into this process. There is no set age, when you suddenly feel ready to be an adult, and cope with all of life’s stresses on your own.  Some young people may be very independent and have left the family home, whilst others may still be living with parents and siblings. Some may be in full time education, whilst others may have full time jobs and responsibilities. Some may have long term partners and children, whilst others may only just be learning to socialise and develop their confidence communicating with others.

If a young adult suddenly develops a life threatening illness, their maturity and social situation needs to be considered. As they are a mix of young person/adult, a mix of services can be very beneficial.

Therefore their offer of care should be patient centred, and include a mix of services that may appropriate for their needs.

The aim is not to replace what adult services already offer, but to complement existing services to ensure the young person is fully supported and has a choice of settings.

As we cover such a large footprint, we have a vast experience of delivering palliative and end of life care to young adults in all areas. We are well practised in the difficult conversations that can take place and the need for parallel planning, to allow the young person to maintain some hope. We are also very used to family centred care and the role that the parents plays in their care.

We usually try to visit alongside our adult colleagues to provide a comprehensive, continuous service, that spans the age range. We have effective communication strategies, to ensure that even though there may be multiple teams involved, that we all work together for the benefit of the young person.

We have an on-call team, and phone number that can be given to professionals to provide support if there are gaps in the specialist palliative care cover.

The team are trained to complete nurse verification, and again this can be used to cover any gaps in the District Nursing team.

We have a team of Non-medical prescribers who can review, assess and prescribe as needed for any escalating symptoms.

We have an experienced butterfly team, who support families immediately after the loss of a child, and can offer support with funeral planning and access to grants etc.

As a hospice, we provide a varied offer of bereavement support for family members. We have lots of bereavement groups for cohorts such as mums, dads, siblings and grandparents. These generally fit better into a Paeds/young adult setting, as they will relate to other parents who have lost a child. Their child may have been an adult, but to them, they will always be their child.

We have worked with multiple adult professional teams over the last 3 years, across the region, whilst we have been developing this service and it has always been a productive collaboration with mutual respect. We take pride in the service we offer as a collaborative team.

Last year we jointly managed a patient between Claire House / MC Hospice and GP. It was the first time we had engaged the services of Claire House in joint management and support. I was overwhelmed by the support and care offered. I am GSF Lead for Brownlow Health and I speak on behalf of the whole team when I say we cannot thank you enough for your input! (GP)

I think the joint reviews help to give the families confidence that there will be continuity.  I think someone who already knows the patient and family suggesting the best method and location of assessment is really helpful… The team at Claire House are incredibly approachable and happy to have conversations if there is uncertainty over what the patient would benefit from. (Adult Hospice Consultant)

More age appropriate to the young adults and family needs… We are very confident that when we refer to Claire House that patients will be in good hands… (TYA lead nurse)

Please complete this Referral Form, if you know a young person that you think may benefit from the service.

Please note, you will need the young person’s permission before referring.

If you have any queries, or need anymore information about our Young Adult Palliative Care service, please don’t hesitate to get in touch.

You can contact Louise Smith, Young Adult Palliative Care Nurse Specialist at Claire House, via email on Louise.smith@clairehouse.org.uk or Louisesmith146@nhs.net

Or by phone on 0151 334 9237, or 07950 002683.