NHS Wig Provision in England

Transcription

1 NHS Wig Provision in England A report into NHS England s provision of wigs to Alopecia patients Authors Amy Johnson (Communications Manager, Alopecia UK) Dr Kerry Montgomery (Research Associate, University of Sheffield)

2 Contents Pages Acknowledgements 2 Executive Summary 3-4 Introduction 5-9 Aims and Objectives 9-10 Methodology Findings Alopecia UK s Summary of Findings Moving Forward: Alopecia UK s Recommendations Supporters Appendices

3 Acknowledgements We would like to express our thanks to the staff from Clinical Commissioning Groups (CCG) and NHS Foundation Trusts across England who took the time to answer our Freedom of Information requests providing us with the information we need to produce our report. Thanks also to Kerry Montgomery and Dr Andrew Thompson from the Psychology Department at the University of Sheffield for conducting the study; The role of wigs for Alopecia patients: a 'cosmetic' product or a necessary coping strategy? A big thank you to all the Alopecia UK members who responded to the above study s survey and those who provided feedback to Alopecia UK about their experiences with wig provision. Alopecia UK is a registered charity committed to improving the lives of those affected by alopecia (Registered Charity Number Scottish Registered Charity Number SCO44702). 2

4 Executive Summary Alopecia UK is a registered charity working to improve the lives of those affected by alopecia through its aims of support, awareness and research. For many people hair is a central aspect of their appearance and hair loss can have a profound negative impact on self-esteem, body image and confidence. Alopecia can present a significant challenge to clinicians as medical treatments are not always available or effective and the British Association of Dermatologists (2011) suggest that wigs should be offered as a treatment option for people living with alopecia areata. Many people may choose to wear wigs to manage the social and psychological consequences of living with alopecia. Evidence suggests that wigs provide a useful strategy for managing negative reactions from others and give alopecia sufferers the confidence to work and engage in social activity. However, Alopecia UK often hears from individuals who struggle to access wigs via the NHS and find it difficult to afford wigs privately. Increasingly, Alopecia UK has been contacted by individuals who have had wig funding withdrawn suggesting that there may have been changes in the NHS trusts policies on wig provision. The National Institute for Health and Care Excellence (NICE) produced a Clinical Knowledge Summary for alopecia areata (CKS; NICE, 2014). Within the CKS wigs are referred to as a specialist treatment which might be used by a specialist but are not recommended for use in primary care. The CKS suggests that whilst wig prescriptions vary by locality most people will be entitled to two wigs a year on the NHS. In addition, information provided within the CKS regarding wigs states that acrylic wigs require frequent replacement (every 6-9 months), with real hair wigs lasting 3-4 years. Interestingly these time frames for wig replacement are not in line with the guidelines proposed by the British Association of Dermatologists (Messenger et al., 2012), despite this paper being referenced within the CKS. Alopecia UK recommends that patients and hair specialists should be consulted when developing wig prescribing guidelines. This report was commissioned in response to the concerns regarding wig provision raised by individuals contacting Alopecia UK. Amy Johnson (Communications Manager, Alopecia UK) contacted 209 CCG s across England to request details of wig provision policies. Sixty-eight trusts (just 33%) provided details of their wig provision policy and the results highlighted disparity regarding the number and type of wig offered each year. Twenty-five organisations referred to the NHS England statement (NHS Choices, 2017 see NHS choices website), Wigs are available from the NHS but patients will be charged for them unless they qualify for help with charges. There are extensive arrangements for providing help with NHS prescription charges and other health related costs such as wigs. There is no nationally set limit on the number of wigs a patient can have from the NHS. However, there is nothing preventing local NHS organisations from setting their own limit 3

5 One Trust had recently withdrawn their funding for wigs. Thirty-one Trusts had no wig policy in place, and thirteen Trusts used the Individual Funding Request process for all wig prescriptions. Six Trusts responded that alopecia is: Considered a cosmetic issue and therefore wigs are not funded. The disappointing results of this report seem to bear out Alopecia UK s initial concern that wig provision is very much a postcode lottery across England. The disparity between NHS Trusts suggests that some people cannot access any funding for wigs, whilst others may receive up to two wigs a year. There is also a disparity in the types of wigs provided by the NHS, and if individuals have a choice of wig supplier. In some NHS trusts it is possible to top-up the wig prescription with the individuals own funds but this is not always the case. The key findings of this report suggest that wig provision within NHS England is very mixed, which leads to inequitable outcomes for Alopecia sufferers across England. Alopecia UK have made recommendations based on this report which aim to target the disparity of wig provision, whilst providing the necessary support to people living with alopecia. Alopecia UK strongly believes that the assertion of some clinicians and policy decision makers working within NHS trusts that Alopecia is a cosmetic issue fails to recognise the significant psychological suffering that can come about as a result of hair loss. Wig provision can aid massively in helping with the trauma a patient is dealing with. Recommendations for psychological support are also given to help people in managing the psychological consequences of hair loss. 4

6 Introduction Alopecia UK is a registered charity working to improve the lives of those affected by alopecia through its aims of support, awareness and research. The exact number of people affected by hair loss is not clear as there are a number of types of alopecia. Overall, alopecia is an under-researched area and many people living with hair loss may not seek medical advice. Predominantly, Alopecia UK is contacted by those affected by the autoimmune condition, alopecia areata. Alopecia areata manifests itself as small bald patches. The condition can become more extensive and result in total loss of hair from the scalp, known as alopecia totalis, or complete loss of hair from the head, face and body, known as alopecia universalis. The prevalence of alopecia areata has been reported to be between % of the population (Safavi et al., 1992). With the population of England being approximately 55 million, this suggests there are approximately 55, ,000 people living with alopecia areata in England. Impact of Hair Loss Whilst alopecia has few physical health consequences it can lead to significant psychological difficulties, similar to bereavement, as the individual has to learn to live with an altered appearance. For many people hair is a central aspect of their appearance and self-image. A systematic review representing 1,271 individuals, concluded that alopecia areata could cause devastating emotions and have a negative impact on self-esteem, body image and confidence (Tucker, 2009). Women have reported anxious preoccupation with hair loss, and worries that others would notice the condition. Feelings of helplessness and reduced attractiveness were also reported (Cash, Price, & Savin, 1993), with 40% of women reporting marital problems as a consequence of alopecia (Hunt & McHale, 2004). Living with a condition that affects appearance can have a significant impact on day-to-day functioning. Research suggests that people living with alopecia may experience social or work related problems and as many as 63% of people living with alopecia reported work related problems (Hunt & McHale, 2004; 2005). In one study of adults, 66% of patients with alopecia areata presented with psychiatric comorbidity (Doblado, Carrizosa, & Garcia-Hernzndez, 2003) ranging from generalised anxiety to depression. Koo, Shellow, Hallman and Edwards (1994) reported that people living with alopecia had higher reported psychiatric diagnosis than the general population, and were at higher risk of developing depression, anxiety and social phobia. 5

7 A recent study, supported by Alopecia UK examined levels of anxiety, depression and social anxiety in people living with alopecia (Montgomery, White, & Thompson, 2017). Clinically significant levels of social anxiety were reported by 47.5% of people living with alopecia, with 35.5% reporting anxiety and 29% reporting depression. The psychological consequences of living with hair loss can include reduced self-worth, dissatisfaction with appearance, and selfconsciousness (Hadshiew, Foitzik, Arck, & Paus, 2004). These negative emotions are likely to lead to negative behavioural consequences. The recent James Lind Priority Setting Partnership for hair loss disorders, supported by Alopecia UK, identified the need for effective psychological interventions as a top ten priority (ranked 4 th ). Currently no tailored support exists to support people with alopecia within the NHS. Whilst selfhelp for people living with skin conditions (e.g., psoriasis and vitiligo) is available (e.g., currently no self-help material has been developed that is specific to hair loss. The self-help that exists for other skin conditions fails to target the specific psychological and emotional consequences of living with alopecia. Alopecia and wigs Alopecia can present a significant challenge for the healthcare system, as medical treatments are not always available or effective. The British Association of Dermatologists guidelines for the management of alopecia areata recommend that wigs be offered as a treatment option (Messenger et al., 2012). The National Institute of Health and Care Excellence (NICE) Clinical Knowledge Summaries (CKS) also categorise wigs as a treatment option for people living with alopecia areata. The guidelines state that whilst there are differences in localities the majority of people are prescribed two acrylic wigs a year. However, feedback from people living with alopecia areata suggests that many people are advised they are not eligible for wigs and/or are not being offered two wigs. In addition, the NICE CKS guidelines for wigs suggests that human hair wigs need replacing every 3-4 years with acrylic wigs needing to be replaced every 6-9 months. The CKS is based on expert opinion in the literature; however, Messenger et al. (2012) provide different guidance on wig replacement to that proposed in the CKS. The paper from Messenger et al. (2012) states human hair wigs will typically last 1-2 years whilst acrylic wigs will last 3-4 months. Further to the timeframes for wig replacement specified in the NICE CKS guidelines and the paper by Messenger et al. (2012), the website of a leading wig manufacturer and NHS wig supplier, Trendco, states that a human hair wig will usually last between 6-12 months depending on how often its worn. The company s guidance on the expected lifespan of acrylic wigs specifies differences according to the length of the wig; 4-6 months for a short-style acrylic wig, 3 4 months for a mid-length or bob style acrylic wig and 2 3 months for a long style acrylic wig. 6

8 Alopecia UK suggest that the NICE CKS guidelines need addressing to ensure they reflect the experiences of patients who wear wigs every day, as is the case with many people living with alopecia to enable them to engage in daily activity such as work and study. Many individuals with extensive hair loss choose to wear wigs to manage the social and emotional consequences of alopecia and reduce the psychological impact of alopecia (Montgomery et al., 2017). For many people wigs are an essential coping strategy (Cash, 2001; Lewis-Browning, 2005; Messenger et al., 2012; Montgomery et al., 2017; Wheeler, 2010). For some people wearing a wig can provide the confidence to return to work (Welsh & Guy, 2009). Alopecia UK wanted to examine the reasons why people choose to wear wigs and the impact this had on social confidence. Findings from a recent study by Montgomery et al. (2017) identified that the main worry about not wearing a wig was the reactions of others. Concerns included worry that others would stare or make comments, or assume they were having chemotherapy treatment. In the survey of 338 respondents, 86.7% of people living with alopecia reported wearing a wig to socialise, suggesting wigs were a valuable strategy to manage social situations. In addition, 76.3% of respondents reported wearing a wig for work, school or university, suggesting wigs gave people the confidence to engage in society. This suggests there may be wider economical implications if wigs were not a readily available or financially viable option for people living with alopecia. Despite fears of their hair loss being found out or the physical discomfort of wigs, people chose to manage any discomfort and/or anxiety of wearing a wig as a way to reduce the negative reactions from others (Montgomery et al., 2017). Of the participants who purchased wigs by NHS prescription (49%), 28.1% reported that they would be unable to afford their wig privately. The majority of participants reported worry about affording new wigs (65.1%), and those who worried about wearing a wig reported significantly higher levels of depression, t(103)=3.40, p < 0.001; anxiety: t(109)=4.80, p < 0.001; and social anxiety: t(294)=3.89, p < This is a concerning finding given that more and more people are contacting Alopecia UK to report their wig funding being withdrawn. 7

9 Respondents also reported a lack of support from the NHS regarding wigs and psychological support provided (Montgomery et al., 2017). These responses highlight an urgent need to address both wig funding and psychological support for people living with alopecia, as respondents highlight the need to fund looking normal and having to cut down on food bills to enable them to feel confident to leave the house. Excerpts from Montgomery et al. (2017). A mixed methods survey of social anxiety, anxiety, depression and wig use in alopecia. The NHS will only fund a set range of wigs and only two a year! Having alopecia affects every part of my life, I don't believe it is taken seriously enough. I believe it affects sufferers mental health dramatically and not enough support is given! I feel it's important not to be limited on wig usage via the NHS. I would never have spent much on my hair care i.e. hairdressers prior to having alopecia as we simply couldn't afford it. Now we have to budget for my wig allowance which feels necessary but with 4 young children it's hard to meet the additional costs this incurs. It feels devastating as I wouldn't normally spend this much money on hair care. For my confidence though we have to do without other things i.e. cut down on food bills etc. to give me a wig. It s not my choice to have alopecia so feels unfair! I think alopecia is vastly underestimated by the medical world. Losing your hair is a huge deal and having to fund 'looking normal' as well as deal with taking that 'normality' off and on is a big deal. I've felt depressed and unable to cope at times - not enough support is given! When you lose your hair it s a very emotional journey to come to terms with wearing a wig. Purchasing a wig should not be stressful but if you cannot afford a wig I feel your NHS dermatologist should offer you the option of a NHS wig Wigs and the NHS A Review of Wig Provision under NHS England Alopecia UK is regularly contacted by members who want to know what their entitlement to wigs via the NHS is. Predominantly those contacting the charity with NHS wig entitlement queries live in England. Members in Scotland, Northern Ireland and Wales report fewer issues. It is unclear if this is due to much lower population numbers in these countries, the fact that prescriptions are free or that campaigning by other groups, such as Alopecia Help and Advice Scotland and the Scottish Alopecia Support Group, have improved provision. Recently Alopecia UK has been contacted by people who have previously been able to obtain NHS wig prescriptions via their NHS hospital, however this option has now been withdrawn. This has resulted in a number of people no longer being able to access NHS support for wigs. We also understand from talking to our members at events, support groups and via our online forums that the quantity and type of wigs individuals are able to access varies considerably between 8

10 different NHS Trusts/Clinical Commissioning Groups resulting in what appears to be a Postcode Lottery for NHS wig provision across the UK. Following this feedback Alopecia UK conducted a survey to examine what people contacting the charity thought was the biggest issue with NHS wig provision. Of 91 people who responded to the survey, more than a third thought the lack of supplier choice was the biggest challenge (See Figure 1). Figure 1: Alopecia UK community responses Alopecia UK community responses : Biggest issue with NHS wig provision? Little or no choice of supplier 9% 7% 4% 4% 35% I cannot access suitable wigs via NHS prescription The number of wigs I receive is not sufficient I cannot get a NHS prescription 9% Unhappy with the quality of NHS wigs I struggle with accessing petite or large sized wigs 15% 17% Limited children s wigs options Having to see a dermatologist each time I need a new wig Alopecia UK regularly hear from people who struggle to afford wigs privately; therefore, it can often be the case for people that if the NHS provides no support with wig provision, people cannot access wigs. Aims and objectives Following regular feedback and concerns regarding wig provision raised by people in contact with Alopecia UK, the charity felt it was in the interest of people living with alopecia and their families to explore NHS funding provision across NHS England. NHS Choices has a statement on its website regarding wig provision in England. It states: 9

11 Wigs are available from the NHS but patients will be charged for them unless they qualify for help with charges. There are extensive arrangements for providing help with NHS prescription charges and other health costs such as wigs. There is no nationally set limit on the number of wigs a patient can have from the NHS. However, there is nothing preventing local NHS organisations from setting their own limit. Unfortunately for some patients with alopecia, that limit is zero. Method Alopecia UK s Communications Manager Amy Johnson originally contacted NHS England s Freedom of Information (FOI) team on 26 September 2014 to request details of the different wig provision policies and procedures throughout NHS England. She was advised that: NHS England does not hold the information relevant to your request. As your request relates to services commissioned by Clinical Commissioning Groups (CCGs). NHS England was unable to provide contact details for each of the 209 CCGs meaning contact details for each of the 209 CCGs needed to be collated by the author. After details of the 209 CCG s were collated, Freedom of Information Requests were submitted to each of them. Although some CCGs responded with the requested details, some informed us that the CCG did not hold details and we would need to contact the relevant NHS Foundation Trust. Further requests were then sent, as appropriate to NHS Foundation Trusts/Hospitals. As such, the responses received are from different types of NHS organisation and listed in our results as NHS Organisation Reply. Where a number of CCGs have asked for the FOI request to be forwarded to the same NHS Foundation Trust, the Foundation Trust reply has only been counted once in the data. For example NHS Newham CCG, NHS Tower Hamlets CCG and NHS Waltham Forest CCG all suggested that the FOI request was directed to Barts Health NHS Trust. The wig policy reply from Barts Health NHS Trust has only been recorded once. The number of replies/non-replies detailed in the summary of results is therefore a smaller number than the 209 organisations originally approached as some trusts cover a number of CCG s. 10

12 As responses were received, the details were collated and this has been used to summarise our findings. Replies from NHS organisations were correct at the time of receiving them (between August 2015 and up to March 2016) and we must acknowledge that there may have been changes in the time between data collection and the publication of this report due to the seemingly fluid nature of NHS organisations with regard to wig provision. Findings Table 1. Summary of replies to FOI requests (August March 2016). Wig policy/process details provided 68 No reply 25 No individual NHS organisation wig policy but referred to NHS England statement regarding wigs and confirmed they acted within NHS England s policy/guidelines 25 No wig policy/process in place 31 No longer funding wigs (recent change) 1 Alopecia considered to be a cosmetic issue therefore wigs not funded 6 Individual Funding Request Process for all wigs 13 Number of Relevant Individual Organisation Replies

13 As shown in Table 1 68 NHS organisations confirmed details of the wig policies and processes in place within their organisations 25 NHS organisations confirmed* they had no individual organisational policy but operated in line with NHS England s guidelines, often signposting back to the page of NHS England s website which provides the statement confirming there are no nationally set limits and there is nothing to stop local NHS organisations from setting their own limits. 31 NHS organisations confirmed that they had no wig provision policy in place. Six NHS organisations confirmed they had no policy wig provision. Their response to our request stated, hair loss interventions are considered to have the sole outcome of improving cosmetic appearance and so are not commissioned by the CCG. One NHS organisation told us they no longer funded wigs with the following reply: In 2015 the Trust reviewed its wig provision service. Following the conclusion of the review, a decision was made to no longer supply wigs to patients. 13 NHS organisations told us that they dealt with each application for a wig via the Individual Funding Request process. No details were provided as to what criteria individuals would need to meet in order to be successful. *These responses are highlighted as different to the replies simply confirming no policy exists as it suggests some NHS organisations believe the NHS England wig statement is sufficient and they do not need to have their own organisational processes or policy regarding wig provision. However, by simply linking back to the NHS England statement, no information was provided regarding what the 25 NHS organisations are offering to patients. 12

14 Breakdown of wig policies provided Table 2. Details of the number of wigs that dermatology patients can obtain via a NHS wig prescription 2 wigs per year (type of wig not specified most likely acrylic*) 21 3 wigs per year (type of wig not specified most likely acrylic*) 2 1 x acrylic wig per year 1 2 x acrylic wigs per year 27 Choice of 1 x monofilament wig or 2 x acrylic wigs per year 2 Choice of 2 x monofilament wigs or 2 x acrylic wigs per year 1 Choice of 2 x monofilament wigs or 2 x acrylic wigs or 1 x human hair wig per year 1 2 x acrylic wigs immediately then 1 x acrylic wig per year thereafter 1 2 x acrylic or 1 x human hair wig per year 2 Number of wigs per year not specified or unclear response provided 10 Total 68 *based on other replies received The results in Table 2 clearly indicate a disparity across NHS organisations regarding wig provision. Overall, the majority of the 68 NHS organisations who responded to the FOI request are implementing the NHS England suggestion of 2 x acrylic wigs per year. It is also apparent that some NHS organisations are offering a choice of type of wig and others are not. 13

15 Monetary value placed on wigs by 68 NHS organisations. Figure 2. Monetary value of wigs Monetary value per wig Number of responses Not specified Less than to to to to 400 Monetary value per wig The monetary value per wig does not represent the cost to the NHS per wig if the patient is required to pay prescription charges. For example, if the NHS organisation allows up to 100 per wig, the patient is allowed to choose a wig that has a retail price up to 100. If the patient pays for their prescriptions they will need to pay the prescription charge of 70.15, meaning the patient is liable for nearly the full cost of the wig. However, the Dermatology department is liable for the full 100 cost of the wig as the prescription charge is not returned to the Dermatology department as a direct contribution to the cost of the wig but instead is paid over to a central government pot, along with other wider prescription charges. Many NHS organisations did tell us that they do allow top-ups to the wig prescription. A top-up allows patients to pay more towards a more expensive wig than their NHS organisation permits, at no extra cost to the NHS. This is a new development and one that Alopecia UK only became aware of whilst undertaking this report. From an online search, Alopecia UK discovered a new Wigs, Supply, Repairs, Maintenance and Accessories Framework was launched by the NHS on 1 February 2015 and specified the following regarding top-ups: 14

16 There is a provision for patients to top up the voucher provided by trusts to purchase a more expensive wig of their choice. However, when Alopecia UK spoke to one NHS wig supplier in April 2016 they confirmed that they were not aware of this change in the rules. Similarly, people have been in touch with Alopecia UK between February 2015 and the time of writing the report to confirm that they have not been allowed to pay extra toward a more expensive wig, suggesting that this change has not been communicated effectively to NHS wig suppliers or patients or suggests that not all NHS suppliers are allowing top ups. The results of the FOI identify a disparity between NHS organisations regarding how much they are prepared to pay towards a patient s wig. This ties in with the experiences fed back to the charity on our online community and by , with some members telling us they are only allowed to choose from wigs that have a retail cost of up to 100 whilst others are able to select from wigs with a value of up to 250. There is a huge difference in the style and quality available at those price ranges. Type of Alopecia NHS organisations were asked to confirm the types of alopecia patients needed to be diagnosed with in order to be eligible for a wig prescription (Table 3). Four NHS organisations responded that wig prescriptions were only offered to those with severe or chronic alopecia and details were not provided as to what was considered severe or chronic. It is unclear if severe or chronic relates to the clinicians objective rating of the patient s hair loss or the patient s own perception of their hair loss. What might seem severe to the patient, perhaps 3 or 4 stubborn bald patches that cannot be hidden with a change of hairstyle, may not be seen as severe by the clinician if they only view total hair loss as severe. The levels of anguish and distress that the patient may feel may be the same or greater than patient s with total hair loss. Seven NHS organisations specified that androgenetic alopecia patients were not eligible for wig prescriptions One organisation stated that only patients with alopecia areata could obtain one. Two NHS organisations explicitly stated that they do not offer wigs for male patients with androgenetic alopecia, perhaps suggesting that they do offer wigs to female patients with 15

17 androgenetic alopecia. Alopecia UK did not raise the question of gender in its FOI request as it was assumed that gender would not, and should not, be an issue when it came to wig provision. Table 3. Type of alopecia to qualify for wigs Any type of alopecia all eligible for wig prescription 20 Response not given to this question or unclear response provided 16 At the discretion of the clinician or Individual Funding Request panel 18 Only for those with severe, chronic or total alopecia 4 Only offer wigs to patients with alopecia areata 1 Do not offer wigs to people with androgenetic alopecia 7 Do not offer wigs to people with male androgenetic alopecia 2 Total 68 16

18 Are human hair wigs offered? NHS organisations were asked if human hair wigs were available on prescription. The responses are summarised in Figure 4. Figure 4. Are human hair wigs offered to patients with alopecia? Are human hair wigs offered? No Not specified At discretion of clinician/'sometimes'/ifr Only if allergic to synthetic Yes Only eleven NHS organisations, out of the 68 that replied, confirmed that they routinely offered human hair wig prescriptions to patients. This is in line with our experience of hearing from many individuals with alopecia who would like to wear a human hair wig but their NHS prescription will not allow. 17

19 Do you provide patients a choice of supplier to take their wig prescription to? We asked 68 NHS organisations responding to the FOI to confirm the number of wig suppliers that patients were able to take their wig prescription to. The responses are summarised in Table 4. Table 4. Does your organisation offer a choice of wig provider to patients? Choice of Supplier Number of NHS Organisations No, patients must go to the one supplier specified by the NHS organisation 23 A choice or 2 3 suppliers provided 16 A choice of 4 5 suppliers provided 8 A choice of 6 7 suppliers provided 2 A choice of 8 9 suppliers provided 6 Patients are allowed to take their prescription to any NHS approved supplier 4 Only one supplier provided but reply states that other suppliers may be considered on a case by case basis 1 Details on supplier choice not specified in response 8 Of the 68 NHS organisations with wig policies, only 4 allowed their patients to take their wig prescription to any NHS approved supplier. 23 NHS organisations insist that patients go to just one supplier. 18

20 Alopecia UK s Summary of Findings The results of the FOI of the 68 NHS organisations that provided details of their wig provision policies highlight disparity in wig provision via NHS prescription in England. Many NHS organisations do not have a wig policy in place. Six NHS trusts reported that alopecia is a cosmetic issue and for this reason there is no funding available for people living with alopecia. This raises concerns as the psychological consequences of alopecia have been widely acknowledged in research, and reporting that alopecia is a cosmetic issue suggests the psychological needs of patients are not being taken into account. For people living with alopecia, having an altered appearance can have a significant impact on their lives, and negative intrusive reactions are a reality for many people, the effects of which can be mitigated by wearing a wig. People living with alopecia receiving care from NHS trusts which consider alopecia a cosmetic issue are therefore at a significant disadvantage. Thirteen of sixty-eight NHS organisations reported using Individual Funding Requests for each patient requiring a wig. This requires a funding report to be generated and put to a funding panel for a decision. To decide on each individual case would seem cumbersome and bureaucratic; and likely lead to further disparity with some individuals being successful and others not. It is also not clear as to the conditions individuals would need to satisfy to be eligible for a wig prescription but it is reasonable to suggest that different NHS organisations and funding panels will have different requirements. In regard to the number and type of wigs provided by NHS organisations responding to FOI requests, there is a clear disparity between what is offered across England. The results showed that most NHS organisations who responded to the FOI offer two wigs per year; however, a significant proportion do not, and we do not know what is happening in the trusts who did not respond to the FOI request. Twenty-seven NHS organisations confirmed these two wigs a year were acrylic and a further 21 NHS organisations simply confirmed two wigs per year but didn t confirm the type. It s most likely these will be acrylic. Unfortunately, acrylic wigs are not hard wearing and many wearers find that their wigs do not last more than 6 months. If the wig is worn daily, which will be the case for many with alopecia, an acrylic wig is unlikely to last longer than 3 months. This is based on advice from wig suppliers and feedback from people living with alopecia. This information contrasts with the NICE CKS information on wig maintenance. The NICE CKS information needs to be consistent with the experiences of Dermatologists, people living with alopecia and wig suppliers and therefore Alopecia UK suggests a review of these guidelines. 19

21 Only 11 NHS organisations confirmed they routinely offer human hair prescriptions. Human hair wigs are more expensive than synthetic fibre wigs but it is worth noting that the prescription charge is much higher too, at nearly four times the cost of a synthetic wig prescription ( compared with 70.15). Typically, a human hair wig can last one to two years (depending on type and quality) as opposed to an average of 3 months for synthetic fibre. Again, this wig maintenance advice is in contrast with NICE CKS guidelines for wig maintenance which suggests human hair wigs can last 3-4 years. It is unclear how this 3-4 year figure has been reached but it is not in line with the experiences of patients or the advice of dermatologists and wig suppliers. Alopecia UK does not endorse one type of wig over another. Offering individuals a choice of the type of wig, based on their lifestyle and personal preference is very important. The results suggest this choice is not provided by the majority of NHS organisations. Wigs have come a long way in recent years with new techniques in wig making and this should be reflected in the choice of wigs offered by NHS organisations. There are different options depending on budget. It is encouraging to see that some NHS organisations are giving their patients the choice of different types of wigs, which is needed due to individual differences in lifestyle and what people find most comfortable. With regard to the choice of supplier a third of NHS organisations do not give patients a choice, often leading to limited choice of wigs and often a supplier who is based in the hospital itself which may result in a more clinical experience than if they were able to take their prescription to a wig salon. Some NHS organisations offered a greater level of choice as to where patients could take their wig prescription, ranging from 2 to 9 suppliers. Only 4 NHS organisations replied to confirm that they allowed patients to take their wig prescription to any supplier. This highlights a disparity across NHS England in wig suppliers. Different suppliers offer different customer service experiences. Some operate in a hospital clinic environment, others have their own wig salon, which to many can be viewed as a replacement to the hair salon experience they may be familiar with and some suppliers are able to offer consultations in a patient s home. The latter option can be extremely valuable to those patients who are really struggling with the emotional impact of the loss of their hair. In particular, many women report a loss of femininity, sexuality and attractiveness as a result of hair loss (Cash et al., 1993; Hunt & Mchale, 2005; Montgomery et al., 2017) and having the choice to go to a specialist salon for their wig may have more positive psychological outcomes than being seen in a hospital department which may emphasise their visible difference. There was a disparity in the monetary value of wigs offered across 68 NHS organisations. 18 of the NHS organisations that responded placed a maximum value of 120 per wig. The use of Individual Funding Request (IFR) panels deciding who should receive NHS funding for wigs was noted for some NHS organisations. Whilst we do not necessarily object in principle to these decisions being made on an individual basis we do have concerns about the IFR process. How does the panel assess a patient s eligibility for a wig prescription? Do they just look at the physical severity of the hair loss? Does the IFR panel recognise that the physical severity of the hair loss 20

22 does not always reflect the psychological impact? Dermatologists who have reviewed this report have proposed that IFR s are time consuming and having a standardised wig policy across NHS England would reduce the burden on Dermatologists to complete IFR s. Moving Forward: Alopecia UK s Recommendations The findings of this report suggest that wig provision within NHS England is a very real postcode lottery that creates inequitable outcomes for Alopecia sufferers. The disparity appears in terms of provision of wigs, funding provided for wigs, and wig supplier choice. The most concerning result is that for some NHS England organisations wigs are not provided as alopecia is considered a cosmetic issue. Alopecia UK believes the improvement in consistent wig provision under NHS England would have significant benefits for people with hair loss. People living with hair loss are often distressed by their condition and problems accessing wig prescriptions, and support, can increase the psychological consequences of the condition. Wigs are not simply a sticking plaster for a cosmetic problem and research consistently shows that wigs can be of great benefit for those struggling with the psychological impact of hair loss as they enable people to reconnect with social support and avoid the intrusive reactions of others. There is a reality to negative or intrusive reactions from others to people living with alopecia; therefore, wearing a wig may mitigate the chance of this occurring. Alopecia is not a choice, and many people simply want to go out without having to manage such reactions. Research also highlights that wigs can give people the confidence to go to work/ school or university which suggests there may be a very real economic cost to wig funding being reduced or removed given reports that for some people with alopecia they would not be able leave the house without a wig. Based on the findings of this report Alopecia UK propose the following recommendations. Our key recommendation is for NHS England to provide detailed guidelines to NHS organisations responsible for local wig provision processes, be it the Clinical Commissioning Group or NHS Foundation Trust. Currently the guidelines state that NHS organisations can set their own limit, and that limit can be zero, which has resulted in a disparity in wig provision given that some organisations provided no wig provision. NHS England should provide an overarching framework which NHS organisations should adhere to which would reduce the disparity of wig provision across the commissioning groups. Our recommendations for NHS England, to be incorporated into an overarching framework on wig provision, based on the findings of this report are: - NHS organisations should increase the choice of supplier to include ANY approved supplier from the Wigs, Supply, Repairs, Maintenance and Accessories Framework nationally. Patients should no longer be restricted to just one or two suppliers. If the 21

23 patient is prepared to travel, they should be allowed to visit any NHS approved supplier of their choosing and select the hair they want to wear rather than the hair offered to them, often with restricted choice, by their assigned supplier. This will greatly enhance and improve the patient experience and reduce the red tape of individual tendering processes by different NHS organisations. This will also drive competition and pricing within the wig supply industry. - Introduce minimum levels for wig provision rather than allowing NHS organisations to set their own limit of zero. This minimum level should be adopted NHS England-wide ensuring that patients are at least able to access some level of wig provision via the NHS. Alopecia UK recommends a minimum level of wig provision of 4 basic acrylic wigs per year or 2 monofilament wigs per year or 1 human hair wig per year. Patients should be given a choice of the type of wig they want to wear. The charity believes this will be a huge step forward for improving wig provision for patients under NHS England and the proposed recommendation is in line with what is currently offered under NHS Scotland. Minimum standardised wig prescribing guidelines across all organisations within NHS England would ensure equitable outcomes for people with alopecia. Alopecia UK would welcome discussions with NHS England and its commissioners and policy makers to discuss implementing standardised guidelines on wig prescribing. - Reconsider the need for dermatology appointments simply to prescribe wigs. After an initial dermatology referral for the first wig, patients may not need to continue with outpatient dermatology appointments, which produces a saving to the NHS for consultations and assists with the already long waiting times for dermatology appointments. Many patients are currently attending dermatology appointments with consultant dermatologists just to access a wig prescription. We recommend NHS England organisations consider the use of dermatology nursing appointments to assess eligibility for future wig prescriptions, freeing up valuable specialist appointment slots for those at the stage of needing a diagnosis. PLEASE NOTE, if a patient requests an appointment with a specialist we would hope they are able to continue to be seen. But if a patient feels it s unnecessary to see a specialist, simply to be provided with a wig prescription, we ask NHS England to consider if this could be handled differently and more efficiently. - Whilst Alopecia UK recommends patients do not pay a prescription charge, where this is necessary patients should be allowed to pay a top-up value in addition to the patient prescription charge and the NHS contribution. For those who can afford to pay a top-up, this will increase the choice of wigs available. - NHS England should be clear in its wig provision policy that the determination as to whether a wig prescription should be granted to a patient should not be on the severity of the hair loss (in terms of amount of hair lost) alone. The psychological impact of the hair loss on the individual patient should be taken into account. This does not include patients with symptoms of body dysmorphic disorder where a referral to psychological support would be most appropriate. 22

24 - NHS England should ensure that Alopecia is not treated, or referred to, as a cosmetic issue by any of its CCGs or Trusts. In line with the Government s pledge to ensure mental health conditions are treated in parity to physical health conditions, NHS England should recognise that many skin conditions, including alopecia, are physical health conditions which have a psychological impact, that can affect a patient s mental health. NHS England should ensure that conditions like alopecia do not fall into the abyss because they do not neatly fit into simply the mental health category or physical health category. - Psychological support for people living with alopecia. Wigs can provide a valuable coping strategy for many people living with alopecia; however, access to accompanying psychological support is also essential, especially given that some people do not have access to wigs. Psychological support options include; Signposting patients to support organisations e.g., Alopecia UK, Changing Faces; Referral to a local Improving Access to Psychological Therapies service (IAPT) to address psychological distress or referral to a specialist Psychodermatology service (where available). Psychological support for alopecia may include but is not limited to, social anxiety, appearance concern, and emotional aspects of living with a visible condition including shame. Alopecia UK supports the All Parliamentary Group on Skin (2013) proposal to invest in specialised Psychodermatology services to improve access to specialist psychological support to people living with skin conditions. Research regarding the psychological consequences of alopecia suggests that hair loss can have significant psychosocial impact and wigs provide an important coping strategy, indeed for many wearing a wig is about appearing normal and being able to function in social situations without being singled out as different (Montgomery et al., 2017). Research suggests that wigs may provide people with sufficient confidence to go to work/school/university and to socialise with others. Wigs give people the opportunity to function within society without fear of judgement or discrimination as a result of their appearance. If wigs are not provided, it raises the important question of whether NHS organisations offer appropriate psychological support for people with Alopecia. Alopecia UK believes that improving wig provision under NHS England is a cost-effective way to improve the lives of those with alopecia. It simply involves standardising an approach across all NHS England organisations, increasing supplier choice for patients and improving the wig options provided to all patients. The framework regarding wig suppliers exists. A clear simple process needs to set out for all NHS organisations to use the same method when dealing with suppliers and patients. This would ensure that all patients across the country are treated fairly and consistently. This would remove the postcode lottery regarding wigs which is unacceptable in Alopecia UK is happy to work with NHS England and the organisations within, as well as suppliers on the framework, to improve this important aspect of a patient s experience with alopecia. In 23

25 addition, Alopecia UK would also welcome discussions with NHS organisations in Scotland, Wales and Northern Ireland to ensure that those with alopecia, wherever they are in the UK, can access the necessary support from health services that they require. The final words are from an individual who responded to the Montgomery et al study: Without a wig l would never leave the house. I would never allow anyone apart from my husband to see me without wearing one, It helps give me the confidence to continue with everyday life. Supporters This report has been reviewed by Dermatology professionals, Psychologists, wig suppliers, and patient representatives. Below is a list of people who have read and support the key recommendations based on the report findings. Dr Andrew Thompson (Clinical and Health Psychologist, Reader in Clinical Health Psychology) Sheffield Professor Andrew Messenger (Consultant Dermatologist) Sheffield Dr Matthew Harries (Consultant Dermatologist) Manchester Dr Sharon Wong (Consultant Dermatologist) London Dr Anthony Bewley (Consultant Dermatologist) London Accompanying quote from Dr Bewley: Lots of my patients are having great difficulty accessing wigs from the NHS. Many hospitals have closed their orthotics departments and patients are required to go to a private provider where they can access wigs of not great quality. All this adds to the burden of their disease and the psycho-social co-morbidities. Some patients simply give up Julie Carr (Dermatology Nurse Specialist) Sheffield Caroline White (Research Nurse) Manchester 24

26 Kate Adkins (PhD Candidate) Sheffield Jen Chambers (Events and Support Manager) Alopecia UK Simon Ray (Chair of Trustees) Alopecia UK Audrey Ball (Trustee) Alopecia UK Harry Brunt (Trustee) Alopecia UK Jeanette Oliver (Trustee) Alopecia UK Anna Preedy (Trustee) Alopecia UK 25

27 Appendix 1 Freedom of Information Request sent to NHS England organisations To whom it may concern, I would be grateful if you could respond to my following request under the Freedom of Information Act. Please provide details of your organisation s NHS wig provision policy for dermatology patients, including those with alopecia and other dermatology conditions which cause hair loss. I would assume that a wig policy would include such information as: - Details of the number of wigs that dermatology patients can obtain via a NHS wig prescription including details of the type of wig allowed, whether a monetary value is placed on allowance, any limitations/timescales. - Can people with all types of alopecia obtain a wig via a prescription? i.e. can androgenetic and scarring alopecia patients obtain a prescription or is one offered just to those with alopecia areata? - If wig prescriptions are only offered to those with a certain severity of hair loss, what extent of the head needs to be affected for a prescription to be offered? - Are prescriptions for human hair wigs ever offered? - What is the organisation s annual budget for wigs?* - Does the annual budget for wigs include wigs for oncology patients as well as dermatology patients? Or are there separate budgets? If so, please provide details of both. * - Do patients have a choice as to a supplier to take their wig prescription? - If a choice of supplier is provided, please confirm the number of choices patients receive and the names and addresses of the NHS approved suppliers. I am happy to receive the wig policy as it stands regardless of whether it covers all the aforementioned points. Please note that I had originally attempted to do a central request to NHS England for this information but they advised me that NHS England does not hold the information relevant to my request. 26