Lynn talks about the Charter for Best Practice for NHS Wig Provision We caught up with Alopecia UK Trustee Lynn Wilks who has been leading our work on a Charter for Best Practice for NHS Wig Provision. Lynn, what is the current situation with wigs on the NHS? Wigs are often available on the NHS, but you might find that nobody in the NHS (GP, nurse, dermatologist) will tell you that. Those with alopecia are often the person to raise the question of wigs and their availability. NHS Wig provision differs depending on which country of the UK you live. In Wales and Scotland, medical prescriptions are free for all people, so many people with alopecia can get a wig prescription or voucher for free. In England (and often in Northern Ireland), most people must pay for a wig prescription, which is currently £75.70 for a standard synthetic fibre wig, in England. The value of the wig you receive will vary depending on what type of wigs are offered by your hospital and the supplier(s) they use. It is typically a dermatologist who will prescribe a wig, and often determine a person’s need based upon the percentage of hair loss. Alopecia UK has been campaigning for a more holistic approach; that NHS wigs allocation is determined by degree of anxiety and how much your hair loss affects you living a normal life (going out socially, to work or college) rather than simply the physical amount of hair loss. A ’postcode lottery’ situation exists for wig provision from NHS organisations across the UK. It is very confusing – who gets a wig, is it one or two wigs a year, are human hair wigs offered? It is certainly ‘not fair’ and there is not equality across the UK. Unfortunately, we are hearing of some NHS Trusts withdrawing funding for wig provision completely. At Alopecia UK, we firmly believe that wigs should be viewed as a treatment option and that the NHS should continue to help with wig provision to patients with alopecia. It is this that led us to our work with NHS England. What does our research tell us about wig wearing? Firstly, you may be one of the 25% of respondents (from our online surveys), that never wears a wig or doesn’t want to wear a wig. You may be comfortable to go ‘au naturel’ or wear hats and scarves. However, about 75% of people with alopecia (of all types) choose to wear a wig at some time. And about three quarters of this group wear wigs most of the time; socially, to work, college. Some people wear them all the time when at home, including in bed. For many people living with alopecia, it is clear that wigs are crucial for living confidently and happily with hair loss. Why did Alopecia UK work on a Charter for Best Practice? We do not believe it is fair that wig provision from some NHS organisations is poor (or even non-existent) whilst others offer a brilliant level of provision. It is not fair or equitable. Those with alopecia who need to access a wig should be able to. We hear on our social media channels how difficult it is to access a wig voucher or prescription. We hear how challenging it can be for some people who cannot afford to buy wigs privately and cannot access wigs via the NHS. We also hear about the dermatologists, GPs and hospitals who do their very best for people with alopecia. So, we know some are offering ‘Best Practice’ – with supply of a good quantity and quality wigs for your prescription charge or voucher. And where you don’t have to wait a year for a dermatology appointment the next year to get a new wig prescription/voucher. What does the Charter aim to achieve? Our aim with the Charter is to support and champion the need for fair access to wigs for people affected by alopecia. It is about raising awareness – so that people with alopecia can understand the situation with NHS wig provision in England. We can all raise awareness of what should be Best Practice with our own GPs, dermatologists and other healthcare professionals. We want to empower you, as a person with alopecia, so you can share the Charter with your hospitals, medical centres and other healthcare professionals. It is about levelling up and equality, ensuring that people can access the quantity and quality of wigs they need. Ultimately, we want assurances that if you cannot afford to purchase your own wigs privately that the NHS will support you in accessing wigs. What can people with alopecia do when trying to access wigs from the NHS? Send a letter attaching a copy of the Charter for Best Practice to your local PALS (Patient Advice and Liaison Service). Take the Charter into your dermatology department and ask what their own wigs policy is. If they don’t have one, or don’t have one that you believe is working, ask them to implement the recommendations in the Charter for Best Practice. Ask about the wig suppliers accessible to you via your local NHS organisation – there should be a choice, and the suppliers should offer a good choice of wigs, to meet your needs in terms of age, ethnicity, hair colour and texture. If the supplier doesn’t offer wigs that meet your needs, highlight this with your local PALS and request access to further suppliers who can provide the type of wigs you need. If you pay a voucher/prescription charge – ask what the value of the wig is that you can choose. It is important to know the value of the wig prescription you are purchasing. For example, in some Trusts, you may be offered a wig worth about £200. Now that’s a good deal because of the prescription charge of £75.70 you are getting a wig of £200 value. But be careful – if you pay £75.70 and just get offered a wig worth £90.00 that’s a bad deal. Why? The answer is VAT. When the NHS pays your salon for wigs on your behalf, it must pay VAT.. That £90.00 value includes VAT. If you bought the same wig privately from the wig salon, you would be eligible for VAT exemption as a medical customer so would only pay £75.00 (based upon a 20% VAT rate). In this case, the prescription doesn’t represent good value because it is costing you more than you would pay privately. This is why it is important to understand the value of the wigs offered to you via the NHS and your rights as a consumer to claim VAT exemption if you buy privately. What is your experience with alopecia and how have you been involved in this piece of work? In many ways I have been lucky in my alopecia journey. I first had patchy hair loss over 20 years ago, possibly related to my underactive thyroid, and while I bought a wig at that time, I never wore it and my hair grew back within 12months, with only an occasional patch over the years. In 2020, at the age of 54, and after some illness and surgery in 2018/19, I lost all my head hair over 4 months and then a year later progressed to alopecia universalis. Thanks to Alopecia UK, I found all the information I needed on the website and was grateful for the peer-to-peer support from the Facebook groups. I wanted to give something back to the charity – my time as a volunteer and using my past experience working for the NHS and pharmaceutical industry. Hence, I joined as a Trustee and was happy to support the development of the Charter for Best Practice for Wig Provision. Through social media and people contacting Alopecia UK, we could see that wig provision was ‘not fair’ and not equitable across the four nations of the UK, but the biggest concerns were heard from England, made up of over 200 separate Trusts all doing their own thing. My own experience of being a patient with alopecia living in Wales was a simple process to access wigs that were of a suitable quality and quantity. Unfortunately, we know not everyone has this experience but we strongly believe that anyone with alopecia who needs a wig to live with confidence should be able to access what they need. We got together a group of dermatologists and other professionals who were great advocates for their patients with alopecia. NHS England and NHS Improvement (NHSE & NHSI), the organisation who oversees and supports the individual hospitals, offered to support this valuable piece of work. It will be NHSE and NHSI who will notify all NHS Trusts in England about the Best Practice Charter and encourage NHS organisations to implement the recommendations within. Big thanks to Lynn for volunteering so much of her time to develop this Charter. We would also like to acknowledge NHS England & NHS Improvement for their support as well as the following organisations: British Association of Dermatology (BAD) British Dermatological Nursing Group (BDNG) British Hair and Nail Society (BHNS) Centre for Appearance Research (CAR) Primary Care Dermatology Society (PCDS) Psychodermatology UK Read more about the Charter for Best Practice for NHS Wig Provision here.