Charter for Best Practice for NHS Wig Provision Alopecia UK has worked with, and been supported by, a number of professional bodies, on a Charter for Best Practice for NHS Wig Provision. The need for a Charter comes from years of hearing the challenges that many in the alopecia community experience with accessing wigs via the NHS, particularly in England, where the support is not equitable because NHS Trusts have different provisions. It could be described as a postcode lottery. This is unfair for patients, and difficult for healthcare professionals who want to offer the best level of care they can. Alopecia UK believes there should be fair access to wigs for people with alopecia and the Charter makes three recommendations to NHS decision-makers, namely: 1. All NHS Trusts/Health Boards set up a ‘Best Practice wigs policy’ so that all people with alopecia, who need and want a wig, can receive wig prescriptions or vouchers in a way that is as easy and timely as possible, whilst reducing pressures on secondary care 2. All people with alopecia, who need and want a wig, should be offered the right number of wigs for their condition based upon the support they need, and how and when they wear wigs. 3. All people with alopecia, who need and want a wig, should be offered a suitable choice and quality of wigs, whatever their race, natural hair colour, age and preferences, and be supported with face-to-face consultations with a wig supplier. In addition to the Charter above, based upon our research, dialogue with patients, healthcare professionals, and wig manufacturers, Alopecia UK recommends that best practice is up to 4 x synthetic fibre wigs per year or one human hair wig per year, but an absolute minimum of 2 x synthetic wigs per year. Alopecia UK’s work has, up to this point, focused on England as it was this area of the UK that appeared to be experiencing the biggest challenges. We believe in fair access to wigs in all nations of the UK, and recommend NHS Scotland, NHS Wales and HSC Northern Ireland adopt the Charter’s recommendations if they are not already. We hear from our community that some people are receiving a great level of provision in Scotland, Wales, Northern Ireland and even in a few of the Trusts in England, we commend those health organisations who are doing well in their care for alopecia patients. Read the full Charter for Best Practice for NHS Wig Provision here Read a shorter 2 page summary Charter document here How can I get my local NHS Trusts/Health Boards to adopt the Charter? We would love as many of you as possible to help with advocating for your local NHS organisations to adopt the recommendations from the Charter for Best Practice for NHS Wig Provision. To help you do this, we have created a 'Clinician Letter' that you can download, print and share with your dermatologists, orthotics departments and GPs. Download our Clinician Letter here Is my local NHS Trust/Health Board obligated to adopt the Charter? Unfortunately not. The Charter has been created to highlight to NHS organisations the importance of wig provision to their patients with alopecia. The way the NHS is now administered means that each individual NHS organisation (219 Trusts in England, 14 health boards in Scotland, 7 health boards and 3 NHS trusts in Wales, 5 trusts (HSC) in Northern Ireland). Each of these individual organisations manages its own staff, commissions its own services, and controls its own budget. In a sense, they can all do their own thing regarding individual services, and therefore we hear of ‘postcode lotteries’ across many different healthcare services and treatments, including wig provision. It is this that makes tackling issues within NHS provision so very difficult and why NHS England suggested we work with them on a Charter for Best Practice. Those in England, may be interested to watch this video from The King’s Fund which attempts to explain how the NHS works in England and might give you an insight as to why it is not a simple ask to get all patients with alopecia the same provision. Whilst it cannot be mandated that all NHS organisations adopt the Charter, Alopecia UK and the alopecia community can raise our voices to reflect why access to the right quantity and quality of wigs is so important to the quality of life of some people with alopecia. The more of us who speak up, the more likely we are to be listened to. Is there is anything more I can do if I am dissatisfied with the levels of NHS Wig Provision offered to me? If you are dissatisfied with the level of wig provision offered by your local NHS organisation, and it is having an impact on your quality of life, you may wish to ask your local PALS (Patient Advice and Liaison Service) to get involved. You can find out more about PALS, including finding details for your nearest PALS office here. We have drafted a template letter/email for you to send to your local PALS. We recommend you tailor the letter/email to include your own experience with alopecia, any challenges you face due to the wig provision policy of your local NHS and any psychological impact of the current level of wig provision offered to you. Also remember to attach a copy of the Charter document too. Find our template letter/email to PALS here Is there anything else I can do if I have no success with my clinicians or PALS? You could lobby your local MP and see if there is anything they are able to do on your behalf to tackle the situation with NHS wig provision in your area. You could write to your MP or consider attending a constituency drop-in to discuss with them face to face. The more people who understand the challenges that those with alopecia face regarding wig provision, and are willing to champion the Charter, the more likely it is that changes are made across many local NHS organisations. Is Alopecia UK doing anything further to lobby the NHS to make changes to wig provision? Currently, our focus is on the roll out of the Charter for Best Practice. Alopecia UK doesn’t have a lobbying department or staff member. Much of the work required to get this Charter to publication has involved the voluntary efforts, time and skills of one of our Trustees, Lynn Wilks. Alopecia UK would like to do more to ensure that NHS organisations support those with alopecia, but we also need to be realistic with how much a small charity like ourselves can do, without a staff member committed to lobbying and campaigning. We will continue to do the best we can to ensure those with alopecia have their voices heard. We will continue to maintain the links we have developed over the years with medical professional groups, who already advocate for the best outcomes for patients, such as the British Association of Dermatologists (and others listed below) to ensure all their members continue to understand the importance of wigs to some of their patients with alopecia. We would like say a BIG thank you to the professionals and organisations who have supported Alopecia UK in creating the Charter document: Dr Tanya Bleiker - British Association of Dermatologists (BAD), Dr Anita Takwale and Dr Yusur Al-Nuaimi - British Hair and Nail Society (BHNS), Dr Syreeta Daw - Primary Care Dermatology Society (PCDS), Lynne Skrine and Melanie Sutherland - British Dermatological Nursing Group (BDNG), Professor Tony Bewley - Psychodermatology UK and Professor Di Harcourt and Fabio Zucchelli - Centre for Appearance Research (CAR). Finally, thank you to NHS England and NHS Improvement for supporting Alopecia UK with this valuable piece of work.