Guest blog: Navigate – a new support for parents
As a Breast CNS Team in a large NHS Trust, we see breast cancer patients who we support from screening, diagnosis, treatment and beyond. Our role has changed over the years and non-more so than in the last twelve months since the coronavirus pandemic hit us.
We have had to adapt and adjust how we manage patients, developing new ways of supporting our patients with minimal face to face contact. In addition the support mechanisms around us have also had to change and this has impacted in our ability to refer to networks, counselling and charities.
The support offered to women in these situations can vary but in normal times would include specialist nurse support in clinics and onward referrals to counselling or community teams. Information leaflets are available and with professional and family support the majority of patients simply get on with their life changing experience.
Issues often arise once treatment or regular contact with a service stops. The patients may feel abandoned or left to cope on their own, unsure of where to go with that uncertainty or question that feels trivial but also important.
During the last twelve months life has been different for all of us but especially those with a cancer diagnosis. The adjustment to having little or no social contact and the informal support networks we all use have been restricted. The feeling of isolation becomes a real issue, who can these women turn to for support and advice in a ‘no contact’ world.
As a team we have seen an increase in the number of patients diagnosed with primary, secondary or metastatic breast cancer under the age of 50 years, (many with young children) we recognised this has the potential to add another layer of anxiety in an already challenging situation.
Just how do you juggle chemotherapy with home schooling?
The CNS team has found this a challenging time and recognised the gaps in support for these women – both in a professional and informal way.
Moving forward we want to make sure women are supported, that they have the right information to make informed decisions – it’s what we would all want for our family and friends.
We felt what was needed was ‘time’ – a time for them to talk, – about themselves, as themselves with no judgment.
To talk about how they were coping, with cancer, with the housework, with cooking, with childcare. We want to give women the opportunity to bring along their young children so we could develop ‘family centred’ support.
We want to provide a way to Navigate the conversation, keep the communication open and honest so that it becomes okay for the children to be inquisitive, so they can learn about mummy’s cancer, why mummy’s hair has gone, why she is napping a bit more today, why we can’t go to the playground.
Our second focus, is Resources………….
What more reading material can we provide to our patients and what is available that we haven’t used before.
We have found a huge variety of books, blogs, phone apps, charity websites, learning kits and flash cards! We recognise the use of more interactive tools is useful, being able to sit down with them in clinic and talk about individual family needs where we can work out how they might adjust their language and explain to their children more about mummy’s breast cancer.
We recognise that this support and resource isn’t offered as standard, and may account for more negative outcomes and experiences.
Our vision is to make this part of our core service provision.
We have applied and are currently waiting to hear about our application for a charity grant to support and take this initiative forward – this it is just the beginning………………….We want to be able to provide family centred support to other cancer groups, not just breast.
But for now, we want to set up our service, allow it to develop and grow, directed by our patients and what works best for them. We want to prepare our patients for open discussion and sign posting to appropriate resources for their individual needs.
We are very excited for the future and look forward to bridging the gaps in support and to better meet the needs of our patients facing breast cancer in a holistic and family centred way.