Chamber and committees

It sounds as though there is quite a bit of discussion to be had between local government and national Government to sort this out and find a solution that works for everyone.

That is all right. I am happy for anyone else to come in.

It is critical to have that framework at this point in time.

Thank you.

I thank the panel for all the information that you have given us already. We have heard about some fundamental disagreements around funding levels and ring fencing. How confident do you feel about a fiscal framework being agreed between the Scottish Government and councils in the next few months? We can start with Kirsty Flanagan.

It is certainly welcome that local neonatal units, including the one in Wishaw, will continue to provide care to the vast majority of babies who need it. The decision to move to three national neonatal intensive care units has been made in line with strong evidence and advice. Does the minister agree that, if we are to deliver the best care outcomes for the smallest and sickest babies born in Scotland, it is important that the expert advice is listened to? Does she also agree that it is vital that the voices of local people are listened to and recognised as part of the process? Can she advise the Parliament what steps the Scottish Government is taking?

I welcome that further investment. Encouragingly, increases in breastfeeding over the past 10 years have been greatest among those groups with low rates historically, such as young women and those living in the most deprived areas. However, only 34 per cent of babies born in Scotland’s most deprived areas were breastfed at their six to eight-week review, which compares with 63 per cent in the least deprived areas. What further steps is the minister planning to take to improve levels of breastfeeding in deprived areas, and will she consider making additions to the baby box?

Yes, absolutely. I hope that we can hear something more on that tonight.

In closing, I am keen to put on the record my thanks to Burning Nights, CRPS UK and others for raising awareness, providing invaluable support and education and spearheading much-needed research into CRPS. I also thank Clare Adamson for bravely sharing her family experience of CRPS and for bringing the syndrome to my attention. I hope that the debate will bring CRPS to the attention of many other people.

I, too, thank Clare Adamson for securing such a vital debate on complex regional pain syndrome, which we refer to as CRPS. It is essential to recognise that CRPS can happen to any of us, yet it remains a silent struggle for so many people. I am grateful to be part of the debate to help to break the silence that surrounds CRPS and to shine a light on the immense challenges that those who live with the condition face. I learned only this week—it seems that it was the same for other members—that CRPS is one of the most painful conditions that we know of, that it is often triggered by a seemingly minor injury, such as a sprain or a bone fracture, and that it can even appear spontaneously, with no known cause.

I have heard the enduring chronic pain associated with CRPS described as being much more painful than any initial injury and that it is a pain so severe that it can be described as

“being burnt alive from head to toe”.

That is a really scary thought.

In addition, CRPS causes pathological changes to the bones, along with intense swelling, heat and skin discolouration, as we have heard already. It is no surprise to learn that those symptoms can disrupt daily life and affect overall wellbeing.

One example that captured me was Ruby’s story. Ruby is a resilient individual who was diagnosed with CRPS in childhood and who faced a challenging shift in symptoms during her time at university. Ruby’s first couple of years at uni went really well, but then her pain escalated, and it reached the point at which sitting upright for more than a few minutes became unbearable.

Ruby’s exciting university life petered out and she had to leave her work placement and rely on essential support back at her parents’ home. That was devastating, especially for someone who describes themselves as a determined individual. The impact on her mental health was profound, not only because of the high level of pain that she was living with but from losing the ability to do the everyday tasks that we often take for granted.

I also point out that we need to increase awareness of the condition. When hearing Ruby’s experience, I was a bit taken aback by the misconceptions that were voiced by her peers, such as, “How lucky you are to rest at home.” Those comments are unhelpful and undermine the intense agony that Ruby was enduring, so we need to make sure that we have compassion in mind.

I also stress the significance of increasing awareness from a medical perspective. CRPS is challenging to diagnose and treat. There is no specific clinical test for a definitive positive result, and patients’ symptoms can vary. The NHS website states that CRPS is a condition that is “poorly understood”, and patients’ symptoms are sometimes dismissed, as we have heard. It would be helpful if the minister could reflect on any steps that the Scottish Government might take to raise awareness.

To ask the Scottish Government what its response is to the recent Public Health Scotland report “Infant Feeding Statistics Scotland”. (S6O-02906)