"Limited products"

About: Adult community services / Nutrition and dietetics

(as the patient),

1) Limited Products

2) Why only 1 pizza bases allowed per month? ?

3) Lack of products

4) Not allowed to order products directly from the chemist via the manufacturers. As is allowed in many other NHS districts

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Responses

Response from Kerry Hollingworth, Corporate Affairs Officer, The Rotherham NHS Foundation Trust

Thank you for your post via Patient Opinion, we really value your feedback.

Here are our responses to the specific queries which you have raised:

Limited Products: The policy agreed and set out by Rotherham Clinical Commissioning Group (CCG) is for the Nutrition and Dietetic Service to offer patients a fair and sustainable amount of products, with the view of keeping gluten free prescribing in the NHS. In Rotherham we also aim to minimise dispensing fees so we can continue to offer gluten free products on the NHS. We do offer the option of a 1, 2 or 3 monthly Prescription which gives the opportunity of having more product lines and a wider variety of products.

Why only 1 Pizza base is allowed per month: The limit of 1 packet of pizza bases to 1 per month (pack of 2) for adults and 2 per month for children less than 19 years was agreed by Rotherham CCG. The decision was based on pizza bases being widely available at a reasonable cost at many supermarkets, pizza bases are considered less of a ‘staple’ than breads and pasta mixes.

Lack of Products: Rotherham Dietetic Services prescribe all gluten free products which have been approved by the Advisory Committee on Borderline Substances (ACBS) and listed in the Monthly Index of Medical Specialities (MIMS). There are over 100 different products listed and available on prescription. A Gluten Free Products list is available and is normally sent out with the patient’s first prescription request. You are welcome to request a further copy of the list when you ring up for your next Prescription from us.

Not allowed to order products directly from the chemist via manufactures, as is allowed in many other NHS districts: In Rotherham, Gluten Free Products are completely free within the allowance while in most places there is a charge that the patient has to pay. To allow for this we negotiate the best way to source the products, with minimal product handling charges. The Dietitian works closely with the Consultants to ensure all patients receive what they require. To date, the Rotherham model has been very well received by patients and GP’s, we will however be interested to review the results of a pilot, in another area, which has used a Pharmacy prescribing service.

Your feedback and comments on the service we offer are very valuable and we hope we have answered your queries. Please be assured we do have the interests of our patients at the forefront of our prescribing.

Thank you again.

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Update posted by Depend557 (the patient)

Hi,

Firstly let me make it clear that I have no issues with the department, their service is "First Class".

I only have issues with available products. I have only recently been diagnosed with Coeliac so I'm new to the in's & out's of things.

The sheet I was given (Dated March 2014) only has 47 items listed, if you add in the variants this then expands to 66 items. so where are the other 34 items??

"There are over 100 different products listed and available on prescription."

The Pizza Base discussion can only have been decided by someone who Doesn't have the problem. If they had to live on a Gluten free diet for a month, this would become clear. If you had to live with the issue, ie living on Gluten Free Bread (that goes stale after 24 Hours), Rice, fish (if affordable), chicken & soup's.

A fresh Pizza once a week is one thing to look forward too. NOT TWICE A MONTH!

I suggest that some of you people actually try living on the Prescription item's for no less than a month and try to find a balanced & Enjoyable diet on a limited budget!

Your attitude towards this issue would be very quickly altered.

Response from Kerry Hollingworth, Corporate Affairs Officer, The Rotherham NHS Foundation Trust

Hello my name is Carrie Morgan, Nutritional Prescribing Lead, thank you for feedback dated 24/12/14, firstly may I apologise for the delay in responding, however I am pleased to hear that you are happy with the department’s service.

I apologise that our initial response was confusing, however to clarify, whilst we stated that there were over 100 gluten free products on our prescription list, as you correctly identified not all are included in our ‘Gluten Free Product List’. This list details the most popular items requested by patients, with a comment at the bottom stating ‘Other products are available and you can discuss these with your Dietitian or the Prescribing Team’. We aim to offer our patients a wide range of products, with restrictions only being on cake and biscuit products, to support the principles of a healthy balanced diet.

We acknowledge your second point regarding pizza base provision and your preference to consume pizza more than twice a month. In Rotherham we are proud of our ability to offer free prescriptions for gluten free foods to those patients with Coeliac Disease and Dermatitis Herpetiformis. Unfortunately there are parts of the UK where there is no entitlement or the amounts are much less. The provision of gluten free products on prescription is to supplement the amounts individuals may wish to buy. Gluten free bases are readily available to purchase in supermarkets, however there are other options for making pizza if these items are deemed too expensive, e.g. the use part baked rolls as an alternative base or pizza dough made from gluten free flour.

If you would like any further information or any tips or ideas regarding these suggestions, I can be contacted on:

Telephone: 01709 427725 or Email: carrie.morgan@rothgen.nhs.uk

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Update posted by Depend557 (the patient)

Hi Carrie,

Thanks for the reply. I would hope the late reply was down to you doing more important things than reading this blog.

As I'm sure you have better things to do with your time;

May I suggest that when the pizza base issue is raised by Customers/Clients that you simply say "they are too expensive to allow 2 packs per month" as folks like myself will then be fully aware of the fact's.

I understand that you may have to use "Corporate Talk" (Gobbley googe) within your job remit - but we are just simple Patients/Customers/Clients and we do understand "simple talk"!

With regard to your comments about making your own Pizza bases - have you actually tried this yourself??

As it just isn't possible with the standard flour mix. You need triple 000 flour mix - which isn't available to gluten free clients - which would then explain why the bases are so dear....

Please try and do your research properly & don't try to patronize me!

Response from Kerry Hollingworth, Corporate Affairs Officer, The Rotherham NHS Foundation Trust

Following our initial response we have had further information provided by the Rotherham Clinical Commissioning Group (CCG):

The Rotherham Clinical Commissioning Group (CCG) agreed that a basic range of staple products should be available for patients – this decision has been made by the GP's that form the CCG, and is based on their experiences of many years of working with patients.

• The quantities offered are in accordance with the guidelines produced by the British Coeliac Society. (https://www.coeliac.org.uk/gluten-free-diet-and-lifestyle/prescriptions/national-prescribing-guidelines/)

• The CCG also works very closely with Public Health Rotherham to promote healthy eating. As part of an overall approach to healthy eating, we didn’t think that we could justify to prescribe gluten free cakes, biscuits, and other specialty products; these items are therefore not on the list of prescribe-able items

• We know that it is hard to eat well and healthily when you are on a restricted diet, and many mainstream services struggle to offer specialist advice. Because of this, the CCG has funded a specialist dietitian for coeliac patients, this can be accessed at any time for advice. We don’t know of any other areas that have funded support like this.

We acknowledge an error in our response regarding charging for Gluten free products:

• Gluten free products are free everywhere - a charge for gluten free items would be against NHS regulations.

• A few CCG's have commissioned gluten free products to be supplied directly to patients from pharmacies but this is not widespread practice.

• Rotherham CCG decided on a different approach, with dietitians managing the process thereby ensuring patients had access to dietary advice.

We appreciate your feedback and are keen to support you with your condition. I would be grateful if you could contact Carrie Morgan, Nutritional Prescribing Lead, Telephone: 01709 427725 or Email: carrie.morgan@rothgen.nhs.uk for further advice/ support.

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Update posted by Depend557 (the patient)

Half of my last "reply" seems to have gone missing.

I would like to see the list of the other "34 items" that "could" be available to people in my circumstance, so that we can have a variety of products open to us - To open up something other than floor mix, Bread & Pasta....

I understand that you don't wish to offer non essential items like cakes, biscuits etc - but surely we are entitled to see a "Fully Open Products" list without some items been hidden, or only open to certain clients...

Response from Kerry Hollingworth, Corporate Affairs Officer, The Rotherham NHS Foundation Trust

Dear Depend557, thank you for your reply.

Please contact Carrie Morgan, Nutritional Prescribing Lead, Telephone: 01709 427725 or Email: carrie.morgan@rothgen.nhs.uk or Helen Wyatt, Rotherham Clinical Commissioning Group, Telephone: 01709 302042 or Email: Helen.wyatt@rotherhamccg.nhs.uk for further information.

A full list of the gluten free products available on prescription can be provided if it is requested. Alternatively, if you remain unhappy with the service, please contact our Patient Experience Team on 01709 424461, who will be happy to help.

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