RARE

An introduction to the RARE Navigator support service

Same but Different (SbD) was established in 2015 by Ceridwen Hughes, following her experiences of becoming the parent to a child with a rare condition. Isaac, Ceri’s son, was born with a rare syndrome called Moebius, and from the moment he was born she recognised that people made assumptions about him because of the way he looked and behaved. Having met many parents over the years who felt the same frustrations, she decided to use her skills to raise awareness of the people behind the conditions, to show that behind each diagnosis or condition is a person with an important story to share. Through the work she was doing to bring people’s rare stories to focus, Ceri realised that there was a commonly shared experience she was seeing time and time again, a lack of any kind of coordination of care and support. And so in 2019 Same but Different introduced the RARE Navigator service, the first of its kind in the UK;

“Having focussed on building a greater awareness and understanding of the impact of rare disease over the past few years we are now able to support families affected by any rare disease throughout North Wales. We will be working with existing support organisations, healthcare providers and community services to ensure the help is where it is needed when it is needed.”

The Rare Navigator service is open to anyone with a rare disease who is currently living in North Wales, and can be accessed in a number of ways. Individuals and families can self-refer into the service, or be referred by an external organisation or social care provider. Care co-ordination was identified as a key area for improvement in the Rare Disease Framework (2021) and our service helps to address this need and was featured as a case study in the Welsh Cross Party Report on Rare, Genetic and Undiagnosed Conditions (2021).

Through the Rare Navigator service Same but Different offer emotional and practical support and information to individuals, their families and all involved in their care, from the point of diagnosis and beyond. This family-focused care co-ordination and advocacy service aims to ensure that each family is able to access the level of support they require to meet their needs, from access to beneficial services and equipment to the tools and resources that encourage understanding of rare diseases. The Rare Navigator team work closely with national and local health and social care providers to ensure that families are informed and have access to optimum care, treatment and services that can assist daily life and increase opportunities for independence and social interaction.

EC and her family have been supported through Same but Different’s Rare Navigator service over the last few years. EC is a minor, and the initial referral was made on her behalf. The family set up is complex, with other siblings and EC’s father also having additional needs, which means the bulk of the care needs fall to EC’s mother. When Katy first met the family they were at rock bottom. Over the years she has worked closely with the family to repair broken relationships with social services and other involved medical professionals, mediating and liaising with these services to guide outcomes. Katy supports the family in monthly MDT sessions to both support and offer a voice when they feel they can’t, and to drive forward agreed plans to make sure any targets are achieved in a timely fashion.

*Names have been changed

It is important to note that the Rare Navigator doesn’t replace specialist rare disease support organisations, rather we work hand in hand with them but with a local North Wales focus.

We asked Katy, our Rare Navigator, for a little more insight into her role. She explained that “the remit of the role is to help people manage all the different threads of their complex lives better so the remit can be really broad because everyone’s experience is very different. It is a tailored service to the family, which might include liaison, advocacy, communication, and collaboration with all the services involved.”

The support an individual or family needs might include:

An initial home visit or virtual support planning session

Finding and communicating with suitable agencies

Attending medical appointments as an advocate

Advocating in social and education settings

Liaison with and organisation of services, including setting up and chairing multidisciplinary meetings

Prompting agencies involved to review the support offered

The wide-ranging nature of the Rare Navigator role makes it truly inclusive, and able to be reactive to the needs of those using the service. Over the years our Rare Navigator Katy has worked hard at building the role, ensuring that it is both wellused and respected within the local area. The Rare Navigator service is open to children, adults, individuals and families, at its heart however lie those at the start of their rare journey, as it is here that an early, positive experience can really help make a huge difference at what can be a hugely difficult time. “For children with rare diseases, special needs, or disabilities, it is vital to ensure that they have access to available services and interventions which can help them to reach their full potential. I think the Rare Navigator role can be a strong link to ensure this.”

Dr Ali Farah, Consultant Community Paediatrician

The Rare Navigator service has been able to do the work it does thanks to the funding and support from the National Lottery, Steve Morgan Community Foundation and Rejuvo. We are extremely grateful to their support.

Our RAREchatUK closed FaceBook group was launched in March 2021 with the aim of creating a safe and private space for our rare community to connect with one another. RAREchatUK is open to adult individuals and close family members such as parents, foster parents and guardians, grandparents, adult siblings and substantial carers (paid or unpaid). It is a space to network, share success stories, challenges and helpful information. The group is supported by our Rare Navigator or other SbD team members as well as two volunteer peer moderators.

Whilst the reality of a life lived with a rare condition is what unites our community, when it comes to online support many might opt to seek support from groups that pertain specifically to the rare condition/s they live with. The role of RAREchatUK is to be a safe space in which members can drop in for a virtual hug, or check in, and not just for practical advice and support.

If you’d like to join please follow the link below, we’d love to see you there. However do ensure you answer the questions. The privacy and wellbeing of our members is central to the group, so each request to join is carefully reviewed.

As part of our RAREhub service our Rare Navigator team run both a weekly online huddle, and local one to one drop in sessions at a number of different locations.

Our online huddles are kept deliberately small, with typically no more than 5 tickets released, to ensure the space remains a warm, welcoming and safe one for our rare community members. As the huddles are hosted via zoom they are a lovely, friendly and low stress way to grab a coffee with others from the rare community, but all without having to leave the comfort of your own home.

Our one to one drop in sessions are held in Mold, Wrexham and Flintshire and can be pre-booked, though a slot will be allocated on the day if one is available.

Details of both our huddles and drop ins are shared via our Facebook page, links below:

Links:

Support Services — Same but Different (samebutdifferentcic.org.uk) https://www.facebook.com/groups/rarechatuk/ Same but Different | Facebook

The death of a child is so awful that no word can encompass the horrific and gut-wrenching pain that is felt by a parent. Children become orphans and spouses become widows, but what do we parents become? It is unnatural to lose a child, they should be outliving you. If you know your child’s condition is terminal or not, there is absolutely nothing that can make it easier and no matter how prepared you are or think you are, you will never ever be ready. The fallout will last your entire life – but that’s not to say you still can’t have a full and happy life. I think of life now as covered with a dust of sadness, I will dust and it will go away but it always settles back down waiting for me to dust again.

Arlo died at 20 days old, he had Trisomy 18, also known as Edwards Syndrome. 20 days, that is it. It wasn’t enough time! I could have had him with me for a lifetime and it still would never have been enough time. Our time together was filled with love; that is all our boy ever knew. Love from us, from friends and family and the wonderful hospice staff at Claire House. That was four years ago. It’s only now that I feel brave enough and a little stronger to handle my grief better. Do not misunderstand, the pain – never going anywhere, the loss and the utter helplessness are constant companions. My life is being rebuilt around my grief, but it is no longer all-encompassing.

I often re-live our short time as a family of four and feel guilty for some choices and wish I could change them. Sometimes, the wave of grief comes out of nowhere and I am floored for a while. The ‘what ifs’ and ‘if onlys’ help spur on the grief and longing, and I am now an expert at finding ways to feel guilty. Guilty for not making certain choices, guilty for losing myself in the grief, guilty for being cross with my son or husband, guilty for feeling happy and enjoying life!

I am learning to be kinder to myself. To accept that there are days when I won’t want to face the world. They are less and less as time goes on, but I doubt they will clear completely. Whatever we do we carry Arlo with us. We live now for him also. He is gone from us physically but never ever from our lives. We celebrate his birthday with cake and presents, we talk of him often and he is included in everything we do in life.

So how can you be there for a grieving parent? Sadly, there is no handbook and grief hits everyone personally and differently. I know from my experience and after speaking to other grieving parents the number one thing you can do is talk about a child that has died. Say their name. Remember them together. Mistakenly people think that they will upset grieving parents by bringing up the child or causing them to remember the pain of losing them, but this is so far from the truth. Honestly, a parent knows their child has died, that pain is there constantly, you don’t remind them because I guarantee the parent will have the child in their mind all the time. What you are doing is giving the parent space to talk about their child. By talking about the child and their life you are acknowledging the grief and the love that is still there. As a parent knowing that you are there and will not shy away from the grief or in fact from them is so important. DO NOT act like the child didn’t exist.

That leads us on to the next thing you can do to support a parent –be there! Personally we found so many people faded from our lives. This can be for many reasons I think, the inability to deal with the grief and emotion from a parent, the inability to deal with their own emotions, not knowing what to do or say etc. Even a simple text, such as just ‘thinking about you today; or ‘do you want to grab a coffee’, can help. There were times when I would sit in front of a TV box set, so as not to have to think, and if I did get a text to go for a coffee etc., 99% of the time I wouldn’t take up the invitation, but knowing that someone had thought about me, my grief and the place I was in, was a little light in my day. I remembered. I appreciated it so much despite me not wanting me to get dressed or face the world.

It seems a little clichéd but the next thing is a meal especially in the first month or two. The ability of a grieving parent to function fully can be difficult. The daily grind of life, the housework, the shopping, the cooking, it all can become overwhelming fast. Not having to think about what to sort out for dinner, especially if there are other children in the home, will be a blessing.

According to the Kübler-Ross grief model, there are 5 stages to grief. These stages can last years. Some people can skip stages and others get stuck on stages. No two people grieve alike, and each of the stages and reactions of the bereaved will be individual to them. Parents grieving the loss of a child will grieve individually to them, despite it being a joint bereavement of a shared child.

The stages are:

Denial - shock, disbelief and numbness. The unwillingness to accept the person has died. It’s our body’s way of dealing with the initial wave of emotions. Anger - looking for blame, angry at doctors or clinicians, anger even at the person for dying. Anger can also manifest in other ways as a focus to direct the grief such as getting angry for little things like the way a person will look at you. It is not always rational.

Bargaining - feelings of guilt of choices made, feelings of being punished, dealing in ‘what if’s’ and ‘if only’s!’ Praying and wishing for different outcomes, despite there being no other way. Depression - this is the stage when loss is really felt. The knowing that the person is not coming back and missing them truly starts. Feeling unable to focus, making decisions are difficult and feelings of hopelessness are common. Changes in well-being such as over or under-eating and disruptive sleep patterns also are normal during this time.

Acceptance - this is not the end of grief or a sudden switch where a person ‘gets over’ the loss in any shape or form. Acceptance is more the realisation of a new reality in which the person is no longer there. Of starting to move forward with this knowledge.

Listen. That’s a huge one. Listen, but do not offer advice or try to ‘fix’ anything. It CAN NOT be fixed, nothing you can do will give the parent their child back or make things different in any way. For me hearing the words ‘I don’t know what to say but I can listen’ was one of the most honest and helpful things. Hearing things like ‘well at least you still have your other child’ infuriated me, and I had to stop myself from asking a parent of two children ‘which child they could live without?’ Others would say ‘time is a healer’ or ‘God only takes the good ones’ The thing for me looking back is I understand that these things were said from a place of goodness, not meant to be hurtful or malicious but at the time it brings little comfort. If a parent gets upset with you for saying the wrong thing, also know that is from grief and if they need to rant let them. I assure you that it will be another thing they will add to the list to beat themselves up over so be kind, do not judge. You don’t have to imagine what the parent is going through as it’s so horrific to contemplate but do try to understand the grief and reactions.

Photographs and videos that you have of the child will be much appreciated, especially over time. I found it difficult to look at any photos and videos for a long time, whereas my husband would sit for hours looking over them and always wanting to see more, so send any you have over. It may not be immediately acknowledged but they will be wanted.

Take other children in the home out, even just to a local pizza restaurant for dinner or to run around a park. The children are grieving too and as a grieving parent, feeling like you are failing the child or children that are here can exacerbate your feelings of grief, guilt, and failure. It may be hard to do the ‘normal’ family things for a while so offering the parents a lifeline for the other child or children will be a little weight lifted from their shoulders for a little while.

Don’t leave things with ‘if you need me just give me a call’ I never ever once reached out to anyone. I never wanted to bring others down or make them carry my grief and pain with me but having someone reach out to me gave me the opportunity to take that step if I felt I could. That was a gift.

Gather information and share it with the parents. For example, a good grief counsellor or details of a bereaved parent’s group. It may not be that it is right for the parent just yet – or even ever, but you are giving them options that may help them and they may not be in a place to seek out the information themselves just yet.

Lastly, do not stop the invites. It may be years before a parent wants to accept to do anything again, so just because you have invited them numerous times before and they never attended, to know the option of joining in with friends and family is always there, that you still want their company is meaningful. One day they may be ready to take that step and having the invitation can be immeasurably important to them.

As time moves on, do not fade away or stop talking about the child. Involve the families in everything. Even now four years into our grief, hearing people talk about Arlo, share things about him, and even fundraise in his name is priceless to us. Not having him remembered is the worst feeling and still hurts so much for us all.