Hi. I’m Lydia Strachan, Founder and Director of Confident Conversations. I’m so pleased you’ve found us and you want to know more about us.

I know what you’re going through, because I’ve been through it too. I started Confident Conversations after I spent 16 months in hospital with my eldest daughter. In the beginning, I was confused, I didn’t know what was going on, and I was incredibly stressed. Over time, I developed good relationships with the nurses, doctors and other medical professionals caring for my daughter. I became a partner in my child’s care. And you can too!

 

But we don’t think you should be left alone to figure it all out for yourself. So that’s why we’re here – to give you the information and support you need to get through this.

Confident Conversations Trustee Board

Confident Conversations Trustee Board

Lydia Strachan, Founder and Chair of the Board

Lydia is an experienced public sector communications professional and a mother of three children. Lydia also has significant experience of being a parent in hospital. Her eldest daughter was diagnosed before birth with a serious congenital heart condition. After 16 months in hospital, and many surgeries and medical interventions, her daughter finally came home, but will require ongoing medical care for the rest of her life. Lydia is also a trustee of the Brompton Fountain, the charity which supports children and their families 

Lydia Strachan, Founder and Chair of the Board

Lydia is an experienced public sector communications professional and a mother of three children. Lydia also has significant experience of being a parent in hospital. Her eldest daughter was diagnosed before birth with a serious congenital heart condition. After 16 months in hospital, and many surgeries and medical interventions, her daughter finally came home, but will require ongoing medical care for the rest of her life. Lydia is also a trustee of the Brompton Fountain, the charity which supports children and their families 

Ward round is likely to make the final decision about going home. If you think you are close to going home, or you have any questions, try and be at that ward round. If you can’t, you can call and speak to your bedside nurse in advance and ask them to ask our questions on your behalf.

Once the decision is made, there is a discharge process which has to be followed, and can take a long time. It is not uncommon to be told you’re going home at a morning ward round and actually leave the hospital late afternoon.

With a long admission you are likely to have a ‘preparing for discharge’ meeting with all the medical professionals involved in your child’s care a week or so before you go home. This would outline all the things that need to be sorted out and a place for you to share any concerns.

You need to feel confident about going home. Many parents feel worried about going home after a stay in hospital, but there are some things you can do to help yourself feel more confident and be more prepared.

  • Ensure you have a plan for getting home. Are you going on public transport, taxi or is someone picking you up? You may be able to get hospital transport home – ask your bedside nurse if you are eligible. If you are receiving certain benefits you may also be able to claim your travel costs.
  • Make sure you understand any ongoing care your child needs, and you have any medication or medical kit (e.g. a sling) which you will need.
    • Will you need to give medication at home? How long for? When? What might the side effects be?
    • Do you need to come back for a follow-up appointment? Has that already been booked? If so, when is it?
  • Make sure any ongoing care plan meets your needs as a family. For example, does the plan require you to wake your child up in the middle of the night to give medicine?
  • Make sure you have all the necessary paperwork before you go home. The discharge summary is the most important but also ask for any medical certificates you may need for your child’s care or school, or your own workplace.
  • Talk to a doctor who knows your child about what’s a normal symptom and what would be a concerning development. Make sure you have a number to call if you have any questions or concerns when you get home.

Leaving hospital can be a great feeling, but you might find it difficult to readjust to your ‘normal’ life. It’s completely normal to feel more anxious about your child after a hospital stay. You may find your thoughts dwelling on your experience, your sleep may be disrupted, and you may have less energy or be more tense. You have been through a significant experience.

  • Your feelings are valid. They may be different from other parents in hospital and that’s normal. There are so many factors that can impact on your ability to cope and your response is unique to your experience. Don’t compare your experiences or feelings with anyone else.
  • Take time for yourself and your important relationships. In hospital, it can become easy to become entirely ‘mum’ or ‘dad’. Give yourself the time to become yourself again. Go for a walk, put on some music and dance or watch your favourite TV show from the comfort of your own sofa. Go out for lunch or drinks with a friend. Have a special dinner with your significant other. Whatever you need to feel like a full person again.
  • Keep asking for help. It’s ok to keep asking friends and family for help after you come out of hospital. You may find everyday tasks difficult or more time-consuming as you readjust. Friends and family can continue to help with things like household tasks and childcare. You may also find it helpful to tell your employer or line manager 
  • You may feel more anxious about not being with your child. This is also normal. When your child is well enough they should return to their usual schedule. If you have any ongoing concerns, you can discuss an ‘escalation plan’ with your child’s teacher or child carer – agree when they will call you for advice or to share information.
  • You may feel vulnerable and miss the ‘safety net’ of the hospital. This is common. Before you leave hospital, your medical team should have given you advice on what to do if your child becomes unwell again. If they haven’t, you can call the ward your child was on and ask to speak to a doctor. You can also take your child to a GP, walk-in centre or A&E (depending on how seriously ill they are), with your discharge summary, to get informed care quickly.

 

Over time, you should gradually start to feel more like yourself. If you are finding it unusually difficult to readjust to life after a hospital stay, you might benefit from seeking professional help. Your child’s hospital may have a team of psychologists to help support families. You can also ask your GP for support or refer yourself for free NHS support (more information here). You can also look for a private mental health provider near your home. Many charities offer free or low-cost options. Your GP should be able to give you a list of these providers. The mental health charity, Mind, has more information on all the options here.

 

You can also help your child readjust to life after a hospital stay.

  • Try to get back to your child’s usual routine – but recognise that it may take some time for your child to be settled again. Like you, they may be anxious and their sleep may be disrupted. It’s important to make allowances for temporary changes while gently (but persistently) trying to get back to their routine.
  • Talk to your child about what they remember about being in hospital. What did they enjoy? What did they find difficult? It’s important to recognise all your child’s feelings, even the ones you may find difficult. This gives them a safe space to share, which is an important part of helping you and your child process your experience.
  • Don’t revisit memories that you find difficult with your child. Be led by what they remember and don’t remind them about potentially traumatic memories that they don’t currently have.
  • Help your child decide what they want to say to their friends before they return to school or nursery, and agree with them what you will also say to their teachers.

 

Your child should also have access to any hospital-provided psychological support. You can also get professional support for children and young people from the NHS and privately.

 

If your child was admitted to hospital at, or shortly after birth, you may not have a ‘normal’ to get back to. Many hospitals have a process to help you adjust to a life without the support (and intrusion) of medical professionals and hospital routines. You should be able to gradually have more and more control over your child’s daily routine, and space to be parents without medical intervention. If you have been at a specialist hospital, you may have the option of going to a hospital closer to your home (often called a ‘local hospital’) to continue this process.

Being in hospital, particularly if you have been in for a long time or for a significant event (such as surgery), can have a real impact on your life. You may feel like making major decisions is harder after your experience. You may feel an urge to ‘play it safe’ and not take risks. You may find yourself wanting to take unusual or out-of-character decisions. You may want to control everything around you to make sure nothing else goes wrong. You may feel ‘frozen’ and unable to make any decision. These are all normal reactions after going through a stressful experience.

 

If you can, you may find it helpful to give yourself some time after a difficult hospital stay before making decisions. Making big life decisions – such as moving house, changing your job or leaving a relationship – can be stressful at the best of times. You deserve time to process what has happened to you, your child and your family, and re-adjust to ‘normal’ life.

 

If you can’t delay a decision, see if semi-permanent options are available to you. For example, if your job feels overwhelming, could you take a period of leave or ask for flexible working? 

 

If you have to make a major life decision while you are still feeling the impact of a significant stay in hospital, it can help to discuss your options with a trusted person in your life or a professional, e.g. a therapist, counsellor or psychologist. You may also find the following framework helpful for making decisions:

 

BRAINS

  • What are the benefits?
  • What are the risks?
  • What are the alternatives?
  • What’s my instinct (what’s my gut telling me)?
  • What would happen if we do nothing, and for how long?

 

Often there is no obvious choice. This is normal. No matter what, you cannot predict the future, and that’s ok. You can only make the best decision you can based on the information you have at the time.

Sarah Major, Trustee and Treasurer

Sarah is an experienced charity accountant. She has worked across the charitable sector including with religious institutions and in the arts. She is currently working in the health sector.

Sarah Major, Trustee and Treasurer

Sarah is an experienced charity accountant. She has worked across the charitable sector including with religious institutions and in the arts. She is currently working in the health sector.

Alice Riley, Trustee

Alice is a mum to two children and has been a stay at home mum since her daughter was born. In 2014, her son was diagnosed with Acute Lymphoblastic Leukaemia, aged three, and spent the next three and a quarter years receiving chemotherapy at two London hospitals. He is now in remission and doing well.

 

It was the support from medical professionals and a few fellow cancer parents that made Alice jump at the chance to be involved with Confident Conversations. She says “all parents and carers should have access to the support we were lucky enough to receive while my son was being treated”.

Alice Riley, Trustee

Alice is a mum to two children and has been a stay at home mum since her daughter was born. In 2014, her son was diagnosed with Acute Lymphoblastic Leukaemia, aged three, and spent the next three and a quarter years receiving chemotherapy at two London hospitals. He is now in remission and doing well.

 

It was the support from medical professionals and a few fellow cancer parents that made Alice jump at the chance to be involved with Confident Conversations. She says “all parents and carers should have access to the support we were lucky enough to receive while my son was being treated”

Satnam Dhaliwal, Trustee

Satnam gained Nursing and Midwifery (NMC) registration as a paediatric nurse in 2012. Following registration, Satnam worked within the paediatric critical care setting. During this time, Satnam gained the knowledge and experience of caring for critically ill children whilst also supporting parents, carers and family members.

Satnam has been in his current role since 2018. Within this role, he develops and educates paediatric student nurses to gain their professional registration. Through his role within nurse education, Satnam has achieved a Postgraduate Certificate of Education (PGCE).

Satnam Dhaliwal, Trustee

Satnam gained Nursing and Midwifery (NMC) registration as a paediatric nurse in 2012. Following registration, Satnam worked within the paediatric critical care setting. During this time, Satnam gained the knowledge and experience of caring for critically ill children whilst also supporting parents, carers and family members.

 Satnam has been in his current role since 2018. Within this role, he develops and educates paediatric student nurses to gain their professional registration. Through his role within nurse education, Satnam has achieved a Postgraduate Certificate of Education (PGCE).

Confident Conversations Patrons

Confident Conversations Patrons

Edwina Thomas

Edwina was one of Confident Conversation’s first supporters. Her generous spirit, love of adventure and commitment to social justice and equality was inspiring. 

Edwina knew how hard it was to be a parent in hospital, and her commitment to friends and family with children in hospital was absolute. Her own children, and those she knew and loved, were central to her life.

Confident Conversations would not exist without her, and we continue our work in her memory.

Edwina Thomas

Edwina was one of Confident Conversation’s first supporters. Her generous spirit, love of adventure and commitment to social justice and equality was inspiring. 

Edwina knew how hard it was to be a parent in hospital, and her commitment to friends and family with children in hospital was absolute. Her own children, and those she knew and loved, were central to her life.

Confident Conversations would not exist without her, and we continue our work in her memory.

Confident Conversations is committed to being a values-led organisation. No one should feel excluded deliberately or inadvertently by our work. All our work, including our interactions with each other, stakeholders and those we support, is guided by the following core principles:

  • Kindness in our approach to our work and ourselves.
  • Differences are our strength. Difference of background, experience and thought is vital to our success.
  • Confidence in engaging with, and challenging, our work at all levels. We must be welcoming and supportive to ensure this happens.

 

In line with the NCVO’s Charity Ethical Principles:

(i) We will respect every individual’s dignity and rights to privacy and confidentiality.

(ii) We commit to challenging any instances of sexism, gender inequality and other power imbalances that leave some people at risk of harm.

(iii) We value diversity in our governing body and volunteers.

 

We expect all those representing Confident Conversations, and/or volunteering with us, to embody these principles.

We are committed to tackling healthcare inequalities in the UK medical system. Health inequalities are avoidable and unfair differences in health status between groups of people or communities. This inequality in health begins early in life with wide inequalities in child health outcomes.

 

We are committed to ensuring all our work is accessible as possible, including ensuring our services are designed to be inclusive, and we make all reasonable adjustments needed for beneficiaries and volunteers.

 

Confident Conversations is run by parents, for parents. We are committed to remaining independent from the NHS and associated bodies (e.g. Royal Colleges). We will always prioritise the needs of those who advocate for patients in hospital.

 

If you have a concern about safeguarding from anyone who volunteers with Confident Conversations, or a trustee, please contact our Safeguarding Officer Satnam Dhaliwal.

 

If you want to report bullying, harassment, discrimination (BHD) or unacceptable behaviour from anyone who volunteers with Confident Conversations, or a trustee, please contact our BHD Officer Ali Riley.

TBC

In Spring 2021, Confident Conversations conducted original research on how confident parents and carers feel in hospital, and what factors impact on confidence. We found that almost half the parents/carers in the survey had been to hospital more than five times over the past five years (53.3%), and 87.8% of parents/carers have been more than once but only 15.6% of parents/carers say they feel ‘very confident’ in hospital. 

 

We asked parents how they felt about being in hospital with their child. Three words stood out: ‘grateful’, ‘worried’, ‘stressed’. Two of these three are negative. In the second grouping of most significant words – ‘scared’, ‘helpless’ and ‘tired’’ – all are negative.

 

Hospital visits are not positive experiences for parents/carers, though the presence of some positive words (albeit very much in the minority) suggests there is scope to develop positive relationships in hospital environments, but that it will not happen organically. It will need external direction.

 

The primary factors which impacted on parents confidence in hospital were (in order of significance):

  1. clear communication from the hospital and medical professionals
  2. how medical professionals speak to me/treat me
  3. being involved in decisions about my child/children’s care

 

Three further factors also stood out (in order of significance):

  1. knowing who is taking care of my child/children
  2. understanding hospital routines and processes
  3. understanding medical words and language

 

Multivariate analysis showed that parents/carers with children with a disability or long-term condition were disproportionately more likely to go to hospital more five times over the past five years, and that those parents/carers were disproportionately more confident in hospital. This shows that parents can learn to become more confident over time.

 

If you would like more information on our research, please contact us.