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1000 Voices Survey Results - Part Two

23rd October 2020


Read part one of the 1000 Voices survey results here


As well as what we've already learned in part one of the results, we also made fascinating findings about menopause, prostate and healthcare.


Shine was not aware of any studies into the age of menopause for women with spina bifida. The ‘received wisdom’ was, the earlier menstruation starts, the earlier menopause would occur. I

n the UK, the average age for women having their last period is 51, in our members the average was 49, which is well within the typical range. Since early and precocious puberty are associated with open spina bifida and hydrocephalus, some women will have periods longer than average, which could have implications for those cancers that are influenced by oestrogen, such as breast or ovarian cancer. Women with spina bifida should attend their routine screening tests, particularly their mammograms. 

Later menopause might help protect against osteoporosis, since this tends to worsen once oestrogen levels drop. HRT can be prescribed for menopause symptoms and bone health, but only 28% of women members who had been through the menopause were prescribed HRT 


The prostate is a gland which surrounds the male urethra at the base of the bladder, which secretes semen.

Throughout life, it enlarges; from the age of 45-50 it can begin to obstruct the bladder neck and can lead to retention of urine and urinary tract infections. In men with spina bifida, it can begin to make self-catheterisation more difficult. 

However, in addition to this benign enlargement (Benign Prostatic Enlargement/Hypertrophy or BPE/BPH) 1 in 8 men will develop prostate cancer, and the risk is higher if you have a family history or are black.

The prostate is well hidden, and you can’t examine it yourself, so talk to your GP if you are over 50 (over 45 if you are black or have a family history of prostate cancer) about prostate checks. 
In the UK, 40% of men aged 50 will have enlarged prostate, rising to 90% of 80+year olds. In our survey, only 8% of men over 50 told us they had an enlarged prostate.

As there’s no medical reason why men with spina bifida wouldn’t have similar rates of enlarged prostate, is this low rate owing to lack of awareness? We urge all men over 50 to ask the GP for regular checks of their prostate size and shape, and to do blood test for prostate cancer (PSA) 


With the complexity of spina bifida, and the many ways it can affect physical and mental health, we wanted to know what healthcare you were able to access, and whether proactive checks, rather than seeking help when you’re ill, was common.

Only 15% of members were able to access care from a multidisciplinary team, and a quarter weren’t under the care of any specialists. Seeing your doctor when ill was more common than having proactive checks. 
Half of our members were under the care of a Urologist, which is good to know, given the higher risk of people with spina bifida for bladder cancer.

People who weren’t under the care of specialists were more likely to have had a pressure sore, and more likely to be in pain most days. 
More than half of members said they had had an emergency admission to hospital in the last 5 years. 14% had had several admissions.

While most admissions were for less than a week, some were for many months, and the average was 20 days. Skin/tissue problems were the commonest reasons for admission, followed by urosepsis. 

Once in hospital, only 24% felt their spina bifida was always well understood, 43% found it difficult or impossible to get specialist equipment, 54% found it difficult or impossible to stick to their bowel routine, and a shocking 23% had acquired a pressure sore while in hospital 

Other findings...

The comments people shared with us were broadly: 

  • Lack of understanding, interest, and specialist knowledge of healthcare professionals, particularly GPs.
  • Receiving reactive rather than proactive care to the detriment of health.
  • Delays and difficulties accessing treatment, and specialist care, physiotherapy especially. 
  • Having to pay for private consultations and care, extra expense. 
  • Low standard of care. 
  • Lack of support and advice. 
  • Lack of understanding and support for health needs associated with ageing 

There is clearly much that could be done, to make specialist care by multidisciplinary teams the rule rather than the exception, to support members to communicate their needs and educate health professionals caring for them.  
There’s a lot to do, but now we have some evidence to take forward. This will form the basis of our work for years to come, guiding members and professionals alike towards the middle years, and beyond, with spina bifida.  
Thank you to all who added their voices, and thank you to the volunteers for the data inputting.  We are very grateful. 
Gill Yaz (Health Development Manager) 


Read part one of the 1000 Voices survey results here

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