Analysis

Coping with chemo: charity customises wigs for patients dealing with hair loss

People devastated by losing their hair due to chemotherapy are being helped by a charity that trains hairdressers to style their wigs

People devastated by losing their hair due to chemotherapy are being helped by a charity that trains hairdressers to style their wigs

  • A good wig, properly cut and styled, can help boost the confidence of patients
  • Hairdressers at UK-wide network of neighbourhood salons founded by celebrity hairdresser Trevor Sorbie learn to fit and style wigs
  • Nurses use role play to show hairdressers how to talk to vulnerable patients
Picture shows celebrity hairdresser Trevor Sorbie styling a wig. People devastated by losing their hair due to chemotherapy are being helped by his charity, which trains hairdressers to customise their wigs.
Celebrity hairdresser Trevor Sorbie styling a wig.

When senior nurse Julie McDonald was diagnosed with breast cancer in 2017 and faced the prospect of chemotherapy, what worried her most was not the prospect of sickness and tiredness.

Her biggest worry was losing her hair.

For many people coping with chemotherapy, hair loss is an especially bitter blow.

Cruel adjunct to the other physical and psychological effects

The dramatic change in appearance that can happen within two or three weeks of starting some anti-cancer drugs is a cruel adjunct to the disease’s other physical and psychological effects.

Men and boys can be just as concerned about this as women and girls. The Teenage Cancer Trust’s #stillme campaign, for example, highlights the effect of hair loss on adolescent boys.

In Ms McDonald’s case, she admits vanity played a part in the fear she felt – our hair helps define who we are and how we feel about ourselves.

But she also believed the loss of her hair loss would identify her as ‘victim’ of cancer.

‘I just wanted to appear as normal as possible,’ she says.

A good wig, properly cut and styled, helped her do that (see box).

Support for people facing medical-related hair loss

Mynewhair is a charity that supports people facing medical-related hair loss by offering a wig-styling service through a network of salons and specially trained hairdressers.

Its founder is the celebrity hairdresser Trevor Sorbie, who describes the charity’s work as ‘psychological medicine’ for anyone suffering hair loss through illness.

He set up Mynewhair in memory of his sister-in-law, Jackie, who lost her hair through treatment for bone cancer and asked if he could help with a wig.

‘I bought a wig, put it on her and it just looked like a wig,’ he says.

‘So I customised it and it looked more natural, and she burst into tears of joy.

‘I had such a strong feeling that I’d helped her, not medically but psychologically, and I wanted to do more.’

A critical part in preparing Mynewhair stylists to work with people who may be feeling especially vulnerable is the training they receive from nurses.

Picture of Ann Fox, a founder board member of the UK Oncology Nursing Society, who became involved 12 years ago with a charity that trains hairdressers to style wigs for people receiving chemotherapy.
Ann Fox

Ann Fox and Joanne Atkinson help deliver Mynewhair training to hairdressers. Both have long experience in cancer care.

Ms Fox, a founder board member of UKONS, the UK Oncology Nursing Society, is executive director of nursing, quality and safety for Sunderland Clinical Commissioning Group, and a visiting professor at the University of Sunderland.

‘The 300 cancer nurses were hanging on his every word’

Ms Atkinson, who is completing a doctorate in end of life care, has a research background in cancer and palliative care, and is head of subject for nursing, midwifery and health at Northumbria University.

They became involved in mMnewhair 12 years ago after meeting through work.

Both had recently lost close friends to leukaemia and those two friends had found wig provision to be lacking.

Picture of Joanne Atkinson who became involved 12 years ago with a charity that trains hairdressers to style wigs for people receiving chemotherapy.
Joanne Atkinson

The neighbour of one was a hairdresser who told Ms Fox about the ‘fantastic’ training he had undertaken in learning to cut and fit wigs.

Through that connection Ms Fox invited Mr Sorbie to a UKONS chemotherapy conference where, she says, 300 cancer nurses were ‘hanging on his every word’.

‘The most important part of their intervention is communicating sensitively’

Ms Atkinson says: ‘Ann and I then had a discussion about how we could help train hairdressers and prepare them for the most important part of their intervention, which is communicating sensitively with people when they most need it.’

The pair say that wig provision at the time did not always address individual need.

‘Wigs were provided by well-meaning people in wig shops but the wigs weren’t fitted properly and weren’t customised to the person,’ Ms Fox says. There was also wide variation in access to wig services and, says Ms Atkinson, ‘a degree of exploitation’ with regard to cost.

Tips for talking to patients about hair loss

Find out how much they know A good starting point is to ask about conversations a person has had with their healthcare team regarding hair loss. To help gauge how they are feeling, use open-ended questions such as ‘Is there anything worrying you about the side effects of treatment?’

Explain what to expect Talking to the patient about what they can expect will help them and their loved ones to prepare psychologically. Outline when their hair might start to fall out and how it might happen. For instance, they may find clumps of hair on their pillow or in the shower. Explain that their hair can start to grow back about a month after finishing treatment but it may be a different colour or texture.

Discuss alternatives Hair loss is very personal and everyone will feel differently about it. Some may find wearing a wig helps them, while for others shaving their head in anticipation of hair loss and going without a head covering can be an empowering experience. Remember, the only ‘right’ thing is what works best for the patient.

Be practical Cancer treatment may make the skin on the head more sensitive. Remind your patient that if they go without a wig in hot weather they need to wear sunscreen. In colder weather, they may want to consider a headscarf or hat to keep their head warm. A thin cotton wig-liner can help avoid scalp irritation.

Signpost support Dealing with the physical side effects of treatment, such as hair loss, can be incredibly difficult. Macmillan’s free support line on 0808 808 00 00 can help if patients have questions or concerns, or just want to chat. They can also visit the Macmillan website.

Georgina Wiley, treatment and recovery adviser, Macmillan Cancer Support

 

When Ms Fox and Ms Atkinson train stylists, their aim is not to make hairdressers experts in cancer but to offer insight into sensitive communication. ‘We say to them very clearly, “It’s not up to you to give advice on anything apart from hair loss”,’ says Ms Atkinson.

‘Then Ann and I role-play a situation and offer them an opportunity to exercise their skills.

‘We dissect it, pull it apart, and then get the stylists to role-play’

‘We let them build those skills during the workshop so they can understand how to improve their communication with people who may be feeling vulnerable.’

The role play is not scripted, Ms Fox explains, but centres on the interaction that begins as soon as a client enters the salon and which may involve that person telling the stylist they are in the palliative stage of their illness.

‘We take what would probably be a few minutes of communication and dissect it, pull it apart, and then get the stylists to role-play.’

Once trained, the stylists are added to the Mynewhair database and website, on which patients can enter their postcode to find a salon close to home.

Both nurses, who are also trustees of Mynewhair, say their involvement with the charity has taught them never to underestimate the effect of hair loss on a patient.

‘What people who haven’t experienced it might see as almost a frivolous thing actually has an enormous impact,’ says Ms Fox. ‘We hear that time and time again.’

‘Local wig provision may be failing to meet people’s needs’

They urge cancer nursing colleagues to avoid the trap they fell into of assuming all is well with local wig provision when in fact the service may be failing to meet people’s needs.

‘That would be my message,’ Ms Fox says. ‘Do you know what the experience is like for the patients you send to the wig service? Have your patients got choice?’

Ms Atkinson adds: ‘If every cancer nurse looks into those issues, they will make a difference for their patients.’

Picture of Julie McDonald before she lost her hair. A charity is training hairdressers to style wigs for people who have lost their hair due to chemotherapy.
Julie McDonald before her hair loss

Case study: ‘The things it will do for your confidence are unbelievable’

Deputy director of nursing at South Tyneside and Sunderland NHS Foundation Trust Julie McDonald detected a lump in her breast in May 2017.

She was quickly referred to the specialist breast clinic at the Queen Elizabeth Hospital, Gateshead. A mammogram, ultrasound and biopsy confirmed that she had breast cancer.

It was an oncology nurse consultant in her own trust who, while arranging chemotherapy for Ms McDonald, mentioned the charity Mynewhair.

‘It was a big thing for me, losing my hair,’ Ms McDonald says. ‘That was the only thing I was worried about in terms of chemotherapy. It wasn’t the sickness or the fatigue.’

She contacted a Mynewhair stylist at a local salon who asked her to send him photographs of her hair as it was then and to come to the salon the following week.

Picture of Julie McDonald after she lost her hair. A charity is training hairdressers to style wigs for people who have lost their hair due to chemotherapy.
... and with her wig. 

‘The wig was so good that when I lost my hair people didn’t know’

‘In the interim, he ordered some wigs that he thought looked like my hair. He matched the one I chose to my colour and styled it, and the wig was so good that when I lost my hair people didn’t know.’

Having a cut and styled wig meant that in periods between chemotherapy, when she felt sufficiently well, she could live life relatively normally. ‘I could put on the wig, go out and socialise.

‘I didn’t feel stigmatised by having cancer. It was almost as though I could leave it behind for a week. And I think it was because I looked well that made that possible.’

And how is she now? ‘Absolutely fine,’ Ms McDonald says. ‘I’ve had my two-year check and, touch wood, seem to be cancer-free.’

She advises other patients facing cancer-related hair loss to ‘get that wig’ before their treatment begins.

‘The things it will do for your confidence are unbelievable. It’s one less thing to worry about before you start your chemotherapy – and it makes such a difference.

Cancer-related hair loss and wigs: what you and your patients need to know

  • There are two main types of wigs: human-hair wigs, which can be expensive and are not usually available on the NHS, and cheaper synthetic wigs, which are available on the NHS
  • Synthetic wigs are free on prescription for everyone in Scotland, Wales and Northern Ireland
  • In England, patients can qualify for a free NHS wig if they meet certain criteria
  • They may be able to get a grant to help pay for a wig
  • Patients may want to buy a wig privately, but should not have to pay VAT on it if their hair loss is caused by cancer treatment

Options patients may want to consider when choosing a wig:

  • Have a wig fitted before they lose their hair, so they can get used to it
  • Try to find a wig to match the volume and colour of their hair
  • They may want to consider a different style to their current hairstyle

Adapted from Macmillan Cancer Support information on wigs


Daniel Allen is a health writer

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