Our team and community members are all at the heart of Metabolic Support. We are invested in supporting families and individuals living with inherited metabolic disorders and we are committed to providing advice and support. We understand that diagnosis, living with IMD’s and changes in circumstances can lead to frustration and uncertainty. Our team will endeavor to help, support and guide you through these times.

You can reach out to Metabolic Support via our Contact Us form on the website, by emailing contact@metabolicsupport.org and by calling 0800 652 3181. We have Peer Support groups and links with other patient organisations, which can offer a wealth of knowledge and support.

We believe everyone deserves to be treated with kindness, dignity and respect. This belief is at the centre of Metabolic Support’s culture. Our team will respond to all queries in a professional and timely manner, and you can expect our team to reply with:

• Courtesy
• Respect
• Sensitivity
• Understanding

We expect our community members to behave with the same level of courtesy and respect. Abusive, aggressive language or bullying will not be tolerated.

Our phone lines are usually manned during the hours of 10am – 4pm, Monday to Friday (excl. Bank Holidays). An answer phone service is provided and we ask that you to leave your name, number and a short message detailing the reason for your call. A a member of our support team will call you back as soon as they become available. This is usually within 1-2 days but can be up to 7 days. From time to time, there might be a delay in responding to queries, owing to staff training, annual leave, or technical difficulties outside of our control.

We are a small team and therefore our time commitment needs to be carefully managed. We also appreciate you may need to access support in short time-frames between other daily commitments. To ensure that we provide the best support we can, we may request a further call to be scheduled if we are unable to fully meet your needs in the time capacity available during your initial call.

What support do we offer?

Listening to your experiences but not providing medical advice. We are keen to listen to your experiences and the impact of treatment and management options. We are not healthcare professionals and unable to offer medical advice or direction on available options. Any changes to your treatment and management plan including, where applicable, any dietary changes must not be made without consultation and full support from your specialist metabolic team or the appropriate team overseeing your IMD. This includes the addition of or any changes to holistic therapies or supplements.

Helping with information and signposting. IMDs affect every individual differently, even when an IMD is present in more than one member of the same family. Where possible, Metabolic Support are able to provide a broad overview of signs and symptoms of specific IMDs within our disorder information pages and we can support you to understand any medical information provided to you. We are unable to advise on individual’s symptoms and/or future course of the IMD. Any advice and concerns around symptoms and future prognosis should be sought from your metabolic team.

We understand that seeking a diagnosis can be challenging and navigating healthcare pathways can be overwhelming. We are here to listen and we work alongside other organisations to raise awareness of IMDs within the healthcare profession. We are unable to provide any indications of a suspected diagnosis. If you are concerned that you may have an IMD, please arrange an appointment with your GP or healthcare provider who, where necessary, will provide a referral to your nearest metabolic centre. In the event your GP is unsure where to refer to, there is a full list of centres on the Metabolic Support website.

We are unable to procure and distribute medications and supplements and do not condone the sharing of these amongst our community. Any issues with access to treatments should in the first instance be raised with your metabolic team and pharmacy/homecare provider. Metabolic Support can act as an advocate or liaison point to raise awareness of these issues with the appropriate providers and address any wider issues within our professional networks.

We are unable to offer support with complaints against any healthcare professional or medical establishment. Any enquiries in this regard will be signposted to the hospital/medical centre’s own complaints procedure.

Metabolic Support offers long-term support and advice to our community and this often covers a broad range of topics across a person’s lifetime. A large part of the work we do is empowering and educating our community, providing you with the tools you need to live well with an IMD, access the support you need, and create a strong support network. As such, our team may provide you with details of local or national organisations who may provide dedicated resources or support relevant to your enquiry.

During calls to our helpline, we are able to offer a listening ear and basic emotional support. Our team are not qualified counsellors and where dedicated mental health support is advised we will always signpost to the relevant provider.

If you feel like you may harm yourself or feel unable to keep yourself safe, or if you believe someone to be in immediate danger then you need to seek emergency help. Please phone 999 for an ambulance or go straight to A&E. If you are unsure on what course of action you should take, please phone NHS 111 or your local crisis line – you can find the details of this by clicking here.

Our individual support services are confidential and this remains the case where more than one member of a family may come to us for support, information, or advice. This is to create a space for whole families to access our support and resources. We are unable to disclose to individuals whether other members of the same family have contacted us and/or in what capacity. We are also unable to follow directions to act on behalf of another individual who has the capacity to access our services and manage their own care. In these instances we will always advise that this person contacts us in their own right.

We may break confidentiality if we feel yourself, or others, are at risk of harm.

We will endeavour to involve you in that process, but we may act without your consent if necessary. Metabolic Support is an umbrella organisation and part of our work is to signpost to other organisations and companies. We only signpost to relevant support organisations who are registered charities and to companies relevant to our community. Occasionally we may also provide links to personal blogs and stories. Any links we share do not signify that we endorse the site or organisation and are there for information purposes only. We have no responsibility for the content shared on external websites.

Our disorder-specific pages contain information that has been sourced and collated by Metabolic Support and adapted into a lay-friendly document. Metabolic Support only uses information from reliable and verified sources and a full list of references is available for each document upon request. All our information is regularly checked by Metabolic Support and where possible has been checked for accuracy by medical experts. The content of these documents is for information only and is not intended to offer personal advice or replace the advice of your healthcare professional. Whilst we endeavor to maintain these pages, please be aware that medical information can change quickly and therefore some information may be outdated.