Answers to common questions and concerns

Q. Is this actually happening?

A. A lot of time has been spent researching and investigating the issues covered. Much of the information is in the public domain and referenced & linked where possible for you to check yourself. Other information has been gathered from Freedom of Information requests and correspondence with the relevant organisations. Where there are still areas of uncertainty we have tried to highlight these and continue to seek clarification.

Q. What is a CCG?

A. NHS Clinical Commission Groups are responsible for ‘buying’ and commissioning healthcare services in individual areas. There are 209 CCGs in England.

Q. Why are NHS CCGs looking at changes to prescribing?

A. NHS Spending is under immense pressure and they are rightly fulfilling their duty to examine their costs and opportunities to reduce spending.

Q. How are these decisions being made?

The decision will be made by the governing body of each individual CCG. As part of the proposal process, the public must be engaged and consulted.

Q. Does this affect my area?

A. Not necessarily. So far we are only aware of Croydon and Richmond proposing major changes to the way specialised baby milk is prescribed. Each CCG makes it’s own decisions for health care in it’s own area, based upon the priorities that they identify in that locality and responses to consultations. Currently, we are working on building up a list of CCGs that have undertaken these consultations and proposals and their progress. This is a considerable piece of work and may take some time.

Q. What is CMPA?

A. CMPA or cow’s milk allergy, is one of the most common allergies in babies and young children. Many babies grow out of it by the end of their first year. Most children are thought to grow out of it by the time they start school. An allergic reaction to cow’s milk occurs when the body’s immune system fails to recognise milk protein as food and treats it as a threat. There are two forms of cow’s milk allergy. The first, which occurs in seconds or minutes after ingesting milk – is referred to as immediate onset, or Ige mediated. The other form of reaction may take place hours or even days later. This is known as delayed onset or Non-Ige mediated. Both Ige mediated and Non-Ige mediated require removal of all milk and dairy products from the diet.

Q. Is CMPA the same as lactose intolerance?

A. No. Lactose intolerance is caused by absence of the enzyme lactase, which breaks down the milk sugar (lactose) so it can be absorbed by the gut. If not broken down, it can cause watery diarrhoea.

Q. Why can’t babies with CMPA have breast milk?

A. While breastfeeding is recommended for all babies, there are many reasons why some mothers are unable to. In addition, a baby with CMPA may react to proteins present in their mother’s milk, making them unwell.

Q. Why are some infant formulas available on prescription?

A. Formulas available on prescription are only those classified as being required for a specific medical purpose. These are different from the ones you will see in the supermarket and are carefully regulated by the Department of Health. They must be approved by the Advisory Committee on Borderline Substances before they can be prescribed.

Q. What is Extensively Hydrolysed Formula (EHF)?

A. An EHF contain’s cow’s milk proteins that have been broken down into smaller bits so that, in most cases, the body’s immune system no longer recognises it as a cow’s milk protein, so does not react to it.

Q. What is an Amino Acid Formula (AAF)?

A. Some babies with CMPA will still react to EHF and will need an AAF. These contain no cow’s milk protein, but are made up of amino acids, which are the building blocks the body needs to convert to proteins.

Q. Can you buy EHF or AAF in the supermarket or online?

A. No. They are not available in the supermarket. They are available from some online registered pharmacies, but should never be bought from Amazon or ebay, or any other unknown source, because it cannot be guaranteed that they are safe.

Q. Do special formulas cost the same as standard infant formula?

A. No. Due to the extensive research and complex manufacturing process that goes into producing them, they cost a lot more than a standard infant formula.

Q. Is there anything that CCG’s can do to reduce the cost of prescribed baby’s milk?

A. While cutting prescriptions for ‘food’ (gluten free products and special infant formulas), seems like an easy way to save money, Borderline substances make up a very small percentage of overall prescription costs.

Money can be saved by improving education, leading to a reduction in inappropriate prescribing, as well as by adequate/timely review of patients to ensure they do not remain on these products longer than is necessary.

Some CCG’s have found it more cost effective to employ prescribing dietitian’s to help with this, as well as reduction of spend on oral nutritional supplements, which makes up the majority of borderline substance spend.

Q. Is Lactose free formula suitable for babies with CMPA?

A. No. These formulas are made from cow’s milk, so still contain the proteins that are harmful to a baby with CMPA, but instead of the naturally occurring sugars found in milk (lactose) they use a different source, such as glucose syrup.

Q. Is soya formula suitable for babies with CMPA?

A. No. Soya is not recommended as an alternative as many babies who are sensitive to cow’s milk protein, also react to soya. Additionally, soya formula is not recommended for infants under 6 months of age.

Q. Are plant based milks suitable for babies with CMPA?

A. No. These milks are designed as a ‘health’ drink for adults. They do not contain the energy, protein or essential vitamins and minerals a baby needs for normal growth and development.

Q. I’m scared about this, what do I do?

A. Keep Calm! As far as we are aware, no CCG has implemented any change to prescribing formula for CMPA babies as yet. Croydon CCG has issued a statement indicating intent, but this still has to pass through an implementation stage, during which there is still room for changes to be made.

Q. What can I do about proposed change to prescription charges in my area?

See: What Can I Do post?

Q. Is the system currently being abused?

A. There is no evidence, of which we are aware, of any widespread abuse of the current system. Some over prescribing may take place, but it is sometimes necessary to try different formulas before the correct approach is identified. Over subscribing can be reduced by improving education of primary care health care professionals.

Q. I have some tins of prescribed formula I no longer need, can I sell these on EBay to someone who may now have to pay?

No, this is Prescription Fraud. You could face a £2500 fine and a criminal record. These formulas should only ever be bought from a registered pharmacist, not Amazon or EBay.

Q. Are the proposed changes this legal?

[Please note, this should not be considered a legal opinion or advice, but just sets out some thoughts.]

A. This is something we need to investigate further. It may be that the only real way of knowing is from a legal judgement. We think there are a few potential areas these decisions could trip up over the law:

If the decisions had been made on the basis of public consultation results where the engagement was unfair or biased, e.g. by providing misleading statements and impact assessments.

Under the Human Rights Act Articles 2 & 14, confers a right to treatment without discrimination. These local decisions will lead to discrimination in treatment based on where you live. As designated Foods for Special Medical Purpose, these formulas have to be used under medical supervision and form the sole source of nutrition, i.e. needed to sustain life.

As a signatory to the UN Convention on the Right of the Child, UK public bodies have the responsibility to provide access to health and healthcare, including nutritious food.

Q. Would taking legal action against the NHS be morally wrong?

A. No one would want to see NHS funds spent on legal fees rather than patient treatments. We would much rather it did not come to that. There are other potential courses of action that can be explored. However, if a decision IS unjust then the final course of action to overturn it would have to be through the courts. The prospects of a legal procedure might be enough to cause a public body to reconsider. Throughout the course of a legal process there would be further opportunities for the public body to respond positively. Only if there were no movement, and a judge considered that the case had merit would it ever reach an actual hearing. Because the consultations look as though they could be repeated across the country, an early test case might also provide the impetus for other CCGs to reconsider their consultations or at least make them much clearer.


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