NHS cost cutting claims after mother-of-two's £17,000 medication row
PUBLISHED: 12:03 23 August 2018 | UPDATED: 13:10 23 August 2018
A Great Yarmouth vlogger has spoken out over what she sees as NHS cost cutting after problems with medication for her rare condition.
Holly Smith, 33, has mast cell activation syndrome (MCAS), a rare immunological condition which strikes around one in 150,000 people.
For Miss Smith it affects her gastrointestinal system and has to take medication before using a special machine every night to clear her bowels.
But she said every month, when she ordered her repeat prescription of Dicycloverine from Central Healthcare Centre in Gorleston, she encountered problems.
Miss Smith, who lives in Hopton with husband Callum and her daughters seven-year-old Mollie-Rose and five-year-old Bella-Marie, said often her prescription was just not ready to collect when she was told it would be.
But she said her main problem came when her GP tried to substitute her medication for a cheaper option, called Alverine.
Both are antispasmodics, which are used to relax the muscles in the gastrointestinal tract.
According to the NHS’s Drug Tariff 60 120mg Alverine capsules has a basic price of £2,328, while 120ml of Dicycloverine cost £17,816.
Great Yarmouth and Waveney Clinical Commissioning Group (CCG) withdrew Dicycloverine in August 2017, as they said the greatest benefit to symptoms is from a similar medicine called Hyoscine Butylbromide.
A statement at the time said: “This decision has been agreed in consultation with local gastroenterologists, taking into account the latest evidence available.”
But Miss Smith said consultants instructed she should keep taking it and the latter was quicker acting, and came in a liquid form, which allowed her more freedom.
She said: “They called me up at five minutes to six on Friday and said we’ve swapped it because there’s a cheaper alternative, even though they are told not to. I’ve got a letter from two consultants saying not to stop the medication because my health will deteriorate and it also says not to put me under any stress and to speak to my husband because I also have autism and it can send me into a meltdown.”
Miss Smith managed to get a three-day supply of Dicycloverine from the pharmacy, but on Monday was faced with a battle with her doctors which she said happened repeatedly.
“Next month it’s just going to happen again,” she said.
The mother-of-two, who under her coupon queen banner has more than two million social media followers, reaches seven million people a week on YouTube, and has starred in a BBC documentary, was so frustrated she tweeted about the issue and said many people had replied saying they had the same experience.
She said: “I’ve gone through 10 years of all different medication, I know the cheaper one does not work for me, it’s just a constant fight and it doesn’t save money in the long run because with the medication I’m able to work.”
Miss Smith has contacted Great Yarmouth MP Brandon Lewis and said she was considering starting a petition too.
“If they take the medication away it will cost the government more, they’re ruining people’s lives.”
Dr Mehrdad Moghaddas, senior partner at Central Healthcare Centre, said: “It is good practice to trial alternative medications with patients to see if they could have a greater impact on easing their symptoms. In this particular case this change was not successful and we have reinstated the patient’s original prescription.
“If the patient has any further concerns, we would encourage her to talk to us directly.”