Benign Tumours Are Not Harmless, Innocent Or Fine

Back in May my non verbal ten year old son went for a routine MRI scan because he has a genetic condition called Neurofibromatosis Type 1 (NF1). What happened next changed my entire family. A few weeks later I had a phone call from my son’s neurologist to say they had found a brain tumour and after discussions with a neurosurgeon and oncologist he had major brain surgery a few weeks later. My son was admitted to hospital and underwent a six hour craniotomy operation for a brain tumour biopsy. He had a long recovery.

Results came back that his tumour was ‘benign’ so I looked up the word and breathed a huge sigh of relief. According to the dictionary that meant his tumour was ‘harmless, innocent, superficial and innocuous’. Fantastic!

Except it wasn’t.

As his surgeon later explained it actually doesn’t matter wether a tumour is benign or cancerous as, especially in the brain, they are just as dangerous and cause major effects.

My son may need chemotherapy at some point. He may need further surgery. His tumour caused him to be epileptic, vomit, have visual difficulties, lose balance, be very lethargic, and be very unwell.

Benign isn’t fine and never will be.

We need to rethink urgently what benign means.

Having a benign tumour isn’t fine for Joe who has had two years of chemotherapy and is now almost blind.

Having a benign tumour isn’t fine for Tayen who is now on her fourth round of chemotherapy, epileptic, and is completely blind just to name a few of her very complex needs.

Having a benign tumour isn’t fine for Evia who is also blind and has had two years of chemotherapy.

Having a benign tumour isn’t fine for Logan whose tumours in his neck, throat, heat and arms are so aggressive surgery is no longer an option leaving him with lung disease, epilepsy, learning difficulties, scoliosis and hypotonia.

Having a benign tumour isn’t fine for Ella who has endured major surgery on her spine.

Having a benign tumour isn’t fine for Ronnie who has had chemotherapy and now has vision loss.

Having a benign tumour isn’t fine for Isobel who has a tumour in her head mouth and cheek and is blind in one eye and facially disfigured.

Having a benign tumour isn’t fine for Harley who has had two operations, 7 general anaesthetics, 5 MRI’s and chemotherapy.

Having a benign tumour isn’t fine for Jon-Paul who is in chronic pain daily with a tumour on his ankle.

Having a benign tumour isn’t fine for Heather who has had her leg amputated below the knee die to a tumour.

Having a benign tumour isn’t fine for Ruby who has endured surgery and 18 months of chemotherapy for a brain tumour.

Having a benign. Tumour isn’t fine for Dan who has had chemotherapy, sepsis and has vision and hearing loss.

Having a benign tumour isn’t fine for Harvey who needed brain surgery.

Having a benign tumour isn’t fine for Kiki who has had chemotherapy for a brain tumour.

Having a benign tumour isn’t fine for Kearyn who has vision loss.

Having a benign tumour isn’t fine for Teagan who also has had chemotherapy as vision loss.

Having a benign tumour isn’t fine for Elayna who is having brain surgery next month.

Having a benign tumour isn’t fine for Shay who has had two brain tumour surgeries so far.

And finally having a benign tumour isn’t fine for Evie who has operations to remove her tumours resulting in a facial nerve being severed and loss of hearing.

Are any of these cases ‘harmless, innocent, superficial and innocuous’? Is that how you would describe what my families and all these other families have been through and continue to go through?

Tumours related to NF1 May be benign but that doesn’t mean we can ignore them. Benign tumours cause pain, damage, deformities, disabilities and can kill.

For the sake of my son and all the thousands of other families living with benign tumours, wether NF1 related or not please can we redefine what benign means and stops giving the impression that benign tumours are ‘fine’.

They are absolutely NOT fine.

Please support the Childhood Tumour Trust campaign using the hastag #BenignIsNotFine

For more information please see http://www.childhoodtumourtrust.org.uk

Thank you.

Hundreds of vulnerable Lanarkshire patients now left without a dentist

Two and a half years. That is a long long time to be working on one basic skill. Yet that is exactly how long it has taken my severely autistic son to get to this stage.
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To let a dental hygienist put a toothbrush in his mouth.

Now that two and a half years worth of work is about to be undone overnight by the National Health service and cuts to the special needs dentistry service in Hamilton.

My son, and my daughter, are among hundreds of vulnerable patients who used the only public dental practice in Hamilton based in Douglas Street community health clinic which opened in 2010 at a cost of 4.6 million pounds. Almost all of the patients using the clinic are unable to access other local dentists due to having learning difficulties, complex needs or autism spectrum disorder.

This week staff at the dental clinic were informed that the clinic would be closed within weeks and all patients transferred to other clinics. To date patients have not received news of this but appointments for treatment are already no longer being booked.

My children, who both have autism, have been attending the clinic for over two years. For Isaac (pictured above) who is non verbal and also suffered from the genetic condition Neurofibromatosis type 1, it has been a long and drawn out process to even get him familiar enough with the building and rooms before he would even enter the corridor the dentists were based in. Due to his complex needs any dental treatment would likely require a general anaesthetic at the children’s hospital so it was of vital importance that his oral health was checked frequently. Isaac is unable to communicate pain and has severe sensory issues making tooth brushing a real struggle. The Douglas street clinic arranged for frequent visits for Isaac to build up his understanding and tolerance of the dentist and used a number of strategies to finally build up his confidence to allow a familiar dental hygienist to get a tooth brush inside his mouth. Appointments were never rushed and photographs of staff, the rooms and equipment were taken to help Isaac become less stressed.

It is patients like Isaac who will now be left with no local dentistry service in Hamilton as a result of theses cuts.

The next nearest clinic for Isaac is four miles away in a building he is not so familiar with and where his current dentist only works one day a week. His wonderful dental hygienist however will be located out with South Lanarkshire altogether and Isaac will no longer get to see both familiar staff in the same location. For Isaac this will mean returning to the same stage he was at over two years ago when he would not even leave the car never mind enter the building! It could be another two years or more before he feels able to see another dentist,

By which time who knows what damage will have been done to his oral health?

Isaac’s twin sister, Naomi, used the same dentist this week as an emergency to have two teeth extracted. Naomi also has autism and has significant struggles with eating and drinking. She reacts acutely to pain and as a result of a wobbly tooth she had refused food and drink for two days prior to contacting the surgery. The staff were familiar with Naomi’s anxiety and were able to help her relax and cope with what was a very traumatic experience for her. All this was due to the fact she sees the staff so often and they have taken the time to get to know her and understand her. Now with these new cuts all this has been lost.

No other local dentist will agree to see either of my children due to their complex needs. 

Patients will receive formal notice of the closure next week but there has been no consultation with staff or patients and no time for transition which is so vital with vulnerable patients such as my children.

How can the NHS close such a vital service to the most vulnerable in society?

I have no idea. Right now though I am very worried about the oral health of both my children and that of the hundreds of other disabled patients who used this service. And I am angry that the fourth biggest town in Scotland now has no special needs dental service at all. 

I am glad I took this photo today. It could be the last my son gets to see a dentist for many years to come.

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