Reviewed: February 2025 

Next review: February 2026 

What is the WhatsApp group (18 to 35 years)? 

The PNH Support community WhatsApp group is a place for individuals (over the age of 18 to 35) living with PNH to share, listen, collaborate and provide encouragement and support. 

The focus of the group is on increasing the physical, mental, emotional and social wellbeing of our community members and building social connections and resilience. 

The group is not for providing or recommending medical treatment, nor meeting medical needs.  If you have any medical questions, please ask your PNH National Service team. 

The WhatsApp group is overseen by a community Administrator who is a volunteer of the PNH Support charity. 

Joining criteria 

  • You are the relevant age for the WhatsApp group and live with PNH in the UK 
  • You consent to sharing your mobile number with the Administrator of the WhatsApp group which will only be visible to the Administrator and not others in the WhatsApp group 
  • You agree to follow the WhatsApp group rules. 

If you don’t meet the joining criteria, we’ll be unable to admit you to the WhatsApp group.  

If we have any concerns about your welfare, we’ll follow our safeguarding procedures. We may have to share information and work in partnership with other agencies. 

Administrator role  

The role of the Administrator is to welcome individuals and regularly remind people of the rules that are in place for the community. Group members will take their cue from how  Administrators behave themselves and model their behaviour. 

The role of an Administrator is to:  

  • Review requests to join the WhatsApp group. 
  • Ensure those who wish to join the group agree with the rules of the group 
  • Add individuals who wish to join the WhatsApp group. 
  • Give members a safe space to post their thoughts. 
  • Look out for harmful content that breaks the community guidelines and address the situation (either by directing the individual to the community guidelines or requesting privately that they edit or remove their post).  
  • Offer support and guidance when needed. 
  • Make sure the space remains supportive, and everyone is included. 
  • Identify people in need and refer them in a private message to other support or  resources if they require. 

The Administrator will not accept any liability for any post, share, or other communication which breaches the rules. The email address for the PNH Support Administration team is contact@pnhuk.org 

Rules of the WhatsApp Group 

All members of the WhatsApp group: 

  • acknowledge and agree to the role of the Administrator in managing and moderating the group activities. 
  • acknowledge and agree that Administrators have the right to verify and/or refuse admission to any WhatsApp group and/or cancel membership at any time and for any reason and/or modify, delete or remove any content at their discretion. 
  • will be polite and respectful of each other. 
  • will take personal responsibility for all posts and comments they make, and for following the Content Guidelines provided here (see below). 
  • will respect the different backgrounds, beliefs and personalities of others in the group. 
  • will not knowingly share misleading or false information, checking the source before sharing.  
  • will not offer or request medical advice. 
  • will not make defamatory statements  
  • will practice empathy, understanding and compassion towards the people who join seeking help and support. 
  • will read and comply with the content guidelines. 
  • acknowledge that the group is not the right place to get help in a crisis. However signposting can be provided for further support. The PNH Support community has the benefit of access to psychologists as part of the Better Together project funded by the National Lottery Fund. A self-referral can be made to access these professionals here.
  • will leave the group once they are no longer within the age range of the group (following a request by an Administrator) 

Content guidelines 

General   

The content guidelines outlined here are intended to ensure the group remains friendly, supportive, reassuring environments for new and existing members alike, where interactions are positive and polite and where disagreements can be dealt with respectfully. The group will be used to promote and share details of PNH Support services, events and news.  In line with this, the following content is not permitted on the WhatsApp group: 

  • Negative or unhelpful comments. 
  • Content that contains any unsolicited or unauthorised advertising and promotional materials, commercial or otherwise, including links to websites containing such materials. For purposes of this guideline, “advertising and promotional materials” includes but is not limited to surveys, contests, pyramid schemes, chain letters, junk e-mail, spamming or any duplicative or unsolicited messages. The only surveys or market research opportunities shared by PNH Support will be those that have been created, or screened by PNH Support. 
  • Inflammatory posts or discussions. 
  • Medical advice. We encourage group members to share their experiences of treatment/care and what worked for them but please don’t give medical advice. This is the difference between ‘I found this technique worked well’ and ‘You should try this particular medicine’. Everyone’s situation and medical history are different, and what you read in the groups should never replace the advice given to you by your PNH consultant, GP and other medical professionals. 
  • Personal contact details. If you wish to share these details with another member, please do so through private messaging. 
  • Offensive or inappropriate posts. These posts will be removed immediately. Based on the Administrator’s best judgement of the intention behind the post or comment, members may be removed or banned from the group. 

Privacy  

  • WhatsApp is end-to-end encrypted. This means that only participants of the group can read or see what has been sent. Each message has a unique ‘lock and key’, this means that even the WhatsApp service is unable to see any of the content within the group. 
  • Each group member has a responsibility to ensure that the device they use to access the group is secured i.e. password/pin protected and the group is not left open for others to see.  
  • To preserve the privacy of the group, members are never allowed to share images, posts or other content posted by others in the group outside of the group without the poster’s explicit, written consent. Members found to be breaching this policy will be removed and banned from the group. If you feel your privacy has been violated in this way, please report it to the group Administrator directly. 

Complaints/grievances  

  • A group member who wishes to complain about any post or discussion which they find offensive must not respond or engage and should approach the Administrator of the group to ensure they are aware of the situation. The Administrator will then investigate further and take any action deemed reasonable and proportionate. This may include: 
  • reiterating the group rules to all group members 
  • informally discussing the issue with relevant group members to ensure there isn’t a repeat of any inappropriate discussion/post 
  • removing relevant members from the group (depending on the context of the situation) 

Safeguarding   

  • If something in the WhatsApp group brings up a feeling or emotion that you’d like to talk through – we would like to remind you that you are not alone and encourage you to seek support and speak with friends, family, your GP, your PNH team and/or clinical nurse specialist. The PNH Support community also has the benefit of access to psychologists as part of the Better Together project funded by the National Lottery Fund. A self-referral can be made to access these professionals here.
  • If you are concerned about an individual within the WhatsApp group, please private message the Administrator or email contact@pnhuk.org. 
  • The list below explains what mental health crisis services are available. These helplines are staffed by trained people ready to listen. They won’t judge you, and you could help you make sense of what you’re feeling.  
  • Samaritans – 24 hours a day – 116 123 
  • SANEline – 4.30pm – 10.30pm – 0300 304 7000 
  • National Suicide Prevention Helpline UK – 6pm – 3.30am – 0800 689 5652 
  • Campaign Against Living Miserably (CALM) – 5pm – midnight – 0800 58 58 58 
  • Shout – Text support service – text SHOUT to 85258 
  • Mind – Weekdays – 9am – 6pm – 0300 123 3393  
  • Macmillan Cancer support – 8am – 8pm – 0808 239 1557 

If you feel like you might attempt suicide, or may have seriously harm yourself, you need urgent medical help. Please: 

  • Call 999 for an ambulance 
  • Go straight to A&E, if you can 
  • Call your local crisis team – if you don’t already have their number, you can find an urgent mental health helpline on the NHS website 

If you can’t do this by yourself, ask someone to help you. 

Mental health emergencies are serious. You’re not wasting anyone’s time.