It’s ok not to be ok

Diabetes care

As a team, we’ve been massively impressed by the resilience, resourcefulness and flexibility families have demonstrated during the pandemic, adapting to manage your diabetes in some very different ways, without the usual level of face-to-face support from the Diabetes Team. The return of schools, colleges and universities, the return to work for many parents and the return to some face-to-face hospital appointments are positives in many ways, but they can also require more planning and effort as well as bringing other challenges, alongside all of the ongoing difficulties and uncertainty.

We want you to know that we recognise and appreciate the potential significance of these challenges, and we know that at times this may understandably impact your diabetes care. We would like to invite you during appointments to highlight to us:

  • any specific challenges you are experiencing
  • any dips or changes in your diabetes care
  • how you think we (i.e. you as a family, and the Diabetes Team) could best care for your diabetes at present.

Whilst the team have lots of knowledge and experience with diabetes, it’s important to remember that you are the experts in your lives! Help us to help you by letting us know what’s going on for you. We know that your diabetes care may not be what you would like it to be at present, and we welcome open and honest discussions about this. In return, we will strive to provide blame-free and judgement-free support, in order to find manageable and sustainable ways to maintain your long-term health and well-being. 

Emotional wellbeing

Life can be challenging enough for all of us, at any time.  We know that long-term health conditions like diabetes can also make life more difficult.  When additional challenges (such as COVID-19) come along, it is understandable that things can at times feel overwhelming, and the effort needed for diabetes care can feel unmanageable. Please remember that this is an entirely understandable response. However, whilst it’s understandable, it can also feel very uncomfortable, and can prevent you from getting the diabetes care you need to stay well and doing the things that are important to you; for these reasons, we would always aim to support you to avoid feeling this way for long periods.

We would recommend having a watch of the following youtube link; click here - it's about 45 minutes long so you might want to make a brew first!. This video is not aimed at children, but it might be helpful for interested parents or young people over the age of around 14. This video is a talk from a Clinical Psychologist who was diagnosed with Type 1 Diabetes at six years old. She talks about her experiences with diabetes both personally and professionally, including “diabetes distress” (the emotional burden which can come from living with and managing diabetes), and strategies she’s found helpful with this.

Please also remember that extra help is available if needed. Have a look at some of the other resources in the emotional well-being section on this website below.

Emotional wellbeing and COVID-19

Long periods of stress and uncertainty can understandably create challenges for our emotional and mental wellbeing.
The following suggestions may be helpful in managing the current situation, including periods of self-isolation:

  • Plan a daily routine - Including changes between “school days” and the weekend.
  • Be active - this can include online exercise classes, eg: the Bodycoach’s PE lessons, dancing, or playing active video games.
  • Connect with people - eg: through video chat, messages, phone calls etc.
  • Get outside - see the sunlight, fresh air and nature if possible.
  • Keep your mind stimulated - as well as through school work, this can be through games, reading or maybe learning a new skill.
  • Maintain a healthy diet - this can have an extremely positive impact on mood, as well as helping with diabetes and your general wellbeing. Click here to see recipes for new ideas.
  • Limit exposure to news and social media - whilst it’s important to stay connected, notice when this may be having a negative impact on your mood and take steps to address it. Eg: checking for updates only once or twice a day, and at pre-determined times and not just before bed.
  • Consider relaxation and mindfulness techniques - see resources in the below tabs.
  • Focus on what is within your control - recognise when your focus is on things that are outside of your control. Whilst this is understandable, it may be more helpful to focus on actions that are within your control, for example, choosing to have a video chat with a friend.
  • Be kind and patient with yourself and those around you - it’s completely understandable to find things difficult at times; look after yourselves, look after each other, and remember that this will end.

Remember that you’ve all already overcome significant challenges previously in dealing with diabetes within your family; we know that families who have already had to overcome other challenges such as this often demonstrate increased resilience and the ability to cope with new challenges. Think about what skills, resources, etc have helped you previously, and how you can use these again or adapt them to help with the current challenges.

You may also find the additional resources useful:

A wide variety of apps are also available that can help children and young people with managing anxiety, including through techniques such as relaxation and mindfulness.

Some of the apps which have been recommended include:

  • Chill Panda - a family-friendly relaxation, breathing exercise and activity app. It allows children and adults to start to understand how their bodies respond to different feelings, and includes some play-based activities demonstrated by a panda avatar.
  • Wysa - an emotionally intelligent chatbot that employs research-backed, widely used techniques such as CBT, DBT, Yoga and meditation, to support users with stress, anxiety, sleep, loss and a whole range of other mental health and wellness needs.
  • Mindful Powers™ - a kid-first, holistic approach to helping young minds learn and practice mindfulness so they can respond more effectively to stressful situations through the power of play.
  • The Worrinots and Wotnot - companion apps to help children offload their worries, and allow parents to monitor their child's concerns. The Worrinots is a secure app designed for children, providing them with a safe place to share their worries, fears and concerns, which in turn provides them with a practical, fun coping mechanism for their fears, using one of the four Worrinots characters. Parents can use the Wotnot companion app in parallel, which has been designed specifically to help parents and carers monitor children’s fears when they are sharing them through The Worrinots app.
  • Headspace - a well-established mindfulness based app, which usually requires a subscription. More suitable for parents and teenagers than younger children.

Remember that there are also two leaflets already available on the Healthzone app, one with information about the psychological support available with difficulties relating to diabetes, and one with support options for other difficulties. Please do have a look at the info if this is something you think may be helpful for you or your family.

Psychological wellbeing

East Lancashire Hospitals (ELHT) Children and Young People’s Diabetes Team

Diabetes and psychological and emotional wellbeing
Diabetes, like other long term conditions, can place lots of demands on young people and their families, on top of the usual challenges which all families face.

Everyone copes with diabetes in different ways, and these can change over time. Sometimes talking to someone can help young people and families feel better about things and find new ways to respond to challenges.

The ELHT Paediatric Diabetes Team has two clinicians who work particularly in this area: Laura Nicholson (Clinical Psychologist) and Liz Voyle (Emotional Wellbeing Practitioner).

What can we help with?
We see young people and families for many different issues in relation to their diabetes. These include:

  • Adjusting to and coping with their diagnosis
  • Learning to live with and manage the condition
  • Anxiety fears, worries, phobias
  • Low mood
  • Eating difficulties
  • Behavioural difficulties
  • Family and peer relationship difficulties

What do we do?
The main types of input we offer are:

  • Individual sessions - We can see you (the young person with diabetes and parent/sibling) on your own or together with other family members, depending on your needs and preferences. We work with you in a variety of ways to identify any difficulties you may currently be experiencing and your aims for input, and how to achieve these. The number of sessions varies depending on each family’s needs.
  • Group sessions - We also run some group sessions, where young people with diabetes or their family members can meet with others in similar situations.
  • Annual reviews - We aim to see all families once a year when you attend your diabetes clinic appointment to review how you feel you are coping with diabetes psychologically and emotionally. This can be an opportunity to highlight any current difficulties and potential solutions.
  • Joint appointments - We sometimes also join with other members of the Diabetes Team to see families, for example during in-clinic appointments or in appointments with a Nurse or Dietitian.

What should you do if you want individual input from the Psychological Wellbeing in Diabetes team?
If you think it would be helpful for you, or a member of your family, to have direct input from us we recommend that if possible you discuss this first with a member of the Diabetes Team, ideally your named nurse. We recommend this because it is helpful if they are aware of any difficulties you are experiencing; they may also be able to suggest alternative solutions. They will then speak to us if you both feel our input would be helpful, and we will contact you to arrange an initial assessment.

If you do not wish to speak to any other members of the Diabetes Team about the issue you can also contact us directly to discuss your difficulties and the option of input.

Our contact details are:

  • Laura Nicholson (Clinical Psychologist) 01282 804804
  • Liz Voyle (Emotional Wellbeing Practitioner) 01254 732558

 

Sources of support for parents and carers

Useful Websites

Downloadable apps

The apps below are available from NHS approved apps on the NHS choices website

  • Blue Ice - an evidence-based app to help young people manage their emotions and reduce urges to self-harm.
  • Stress and Anxiety Companion - helps you handle stress and anxiety on-the-go.
  • Calm Harm - designed to help people resist or manage the urge to self-harm.
  • Rally Round - the online tool that allows parents, other family members, friends and carers to organise support for a child with an illness or challenging behaviour.

Local Sources of Advice and Support

If you provide care and support to a family member, adult or friend you may be
eligible for support from your local council.

For details please see NHS Choices at nhs.uk

  • Carers Link Lancashire - supports unpaid carers who look after a family member or friend across Burnley, Pendle, Rossendale, Hyndburn and the Ribble Valley | 0345 6887 113
  • Young Addaction - substance misuse service for under 25’s in East Lancashire | 0808 1640 074
  • Inspire - a free and confidential drug and alcohol service for adults (including offenders), families, carers and affected others in Blackburn with Darwen | 01254 495014
  • GO 2 - a free and confidential drug and alcohol service for young people in Blackburn with Darwen | 01254 495 014
  • East Lancs Health Minds - Mental Health advice, guidance and directory | 01282 644700
  • Action for ASD - an autism resource centre | 01282 415455
  • ADHD Northwest - a service to improve the wellbeing of individuals and families affected by an Attention Deficit Disorder and associated conditions | 01524 411044
  • Mindsmatter - work with adults from the age of 16 upwards who may be struggling with common difficulties such as stress, anxiety and depression | 01282 657268
  • ChatHealth - a confidential way that young people can text a School Nurse for any advice and support that they may need. For BwD Text: 07507330509 | For Lancashire Text: 07507330510
  • SENDIAS - If you live in Lancashire you can get information, advice and support around special educational needs and disabilities (SEND) from the Information, Advice and Support (IAS) Team | 0300 123 6706
  • Brook - provides free and confidential sexual health services to young people under 25. For Lancashire 01282 416596 | For BwD 01254 268700
  • Nest Lancashire - set up to support young people aged 10 to 18 who have been affected by crime or subjected to bullying, threats or harassment | 03001110323