NHS Cuts Finally Affecting Ostomates! Know Your Rights!

NHS Cuts Finally Affecting Ostomates! Know Your Rights!

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The NHS was created on the 5th July 1948 out of the ideal that good healthcare should be available to all, regardless of wealth. In many ways, it has been a victim of its own success. Improvements in treating disease and illnesses have helped to create an ageing population which means more people than ever need its services.

This, therefore, consequently has put the NHS in financial crisis and is under pressure to reduce its spending deficit by £30 billion in 2020 (NHS England 2014)

One of the areas that have been targeted to try and cut back spending are prescriptions.

Stoma appliance prescriptions

According to the Prescription Cost Analysis England in 2016, the cost of prescriptions dispensed in England was £9.20 billion.

From this data, 6 million stoma appliances were requested resulting in a cost of £295 million in 2016 in England alone!

A substantial amount of money and from this information it is easy to see why stoma appliances were an area that they could cut back on. So since 2015, the local Clinical Commissioning Groups (CCG’s) have released Stoma prescribing guidelines for all primary care prescribers in their areas.

The levels of prescribing for incontinence and stoma appliances have increased and subsequently, the national spend has increased also. However, this does not necessarily indicate that the system is being abused and that we are ordering way more than we need.  The number of people living with long-term conditions is growing at the same time as the population, in general, is ageing. This means that the number of people who require continence care in the form of stoma appliances and catheters is rising. However, GPs and CCG’s may have limited knowledge of continence care and stoma appliances in general and this can result in a less than optimal quality of care. Some of the issues that can result from this include a lack of clinical review, inappropriate product choice, over-prescribing, poor patient experience and potentially compromised patient safety. This is where ostomates can learn to advocate for themselves and challenge prescriptions in a respectful and knowledgeable way if we feel we need a particular product and can justify its regular prescription.

These prescribing guidelines have been rolled out since 2015 but now at the end of 2017 ostomates are starting to be impacted by the changes. I carried out a mini research project over the ostomy support group and present my findings later. The budgets for one area of spending is totally separate from the budgets in another area of spending which therefore means that not all ostomates are encountering problems or having changes to their prescriptions.

In these stoma guidelines, some local CCGs have introduced formularies, which limit the types of products that prescribers are able to prescribe to ostomates. A formulary features a reduced number of products from the Drug Tariff and instructs or encourages prescribers to prescribe from that list. The purpose of this is to bias prescribing towards cheaper products and away from more expensive ones. Prescribers will be able to direct ostomates properly to alternative products, potentially leading to more money spent and worse outcomes for us. This increases the likelihood of ostomates being directed towards unsuitable products, potentially leading to more money being spent and the worst outcome for us.

While the CCG’s and the Department of Health would argue that patients are free to request products from the wider Drug Tariff list, this requires a level of information and knowledge on the part of the patient.  Later on, I will explain the importance of ‘Patient Empowerment’ - knowing our rights and where to turn to if this effects you.

Local CCG Stoma Appliance Guidelines (formularies)

It is important to be aware that you can download your local CCG stoma appliance guidelines through Google search and access the pdf.

For example, I live in Bournemouth so I put into Google Dorset CCG stoma appliances guidelines and up pops this document...

Screenshot 2017 12 08 09.04.16

I struggled to find a breakdown and a formulary list for my area on the internet. As mentioned some areas may include a formulary list and some may not.. Here is an example of the breakdown and costing from Ipswich and East Suffolk formulary October and November 2017.

                                       Formulatory PRICE            suffolk skin accesory

From reviewing many different areas CCG guidelines and formulary and speaking to ostomates affected at the moment it seems the ‘accessory’ items, in particular, are being cut, changed or challenged!

First of all, I struggle with the word accessory! For some ostomates, they are ESSENTIAL items that are needed and may take a long time finding items that work well for them. It is important that this word is challenged because if something is an ‘accessory’ then it can easily be cut out which isn’t the case for some ostomates. I believe Coloplast have changed this word regarding their Brava products to ‘supporting products’ which is much better.

Saying this though, we have a responsibility not to over order and only order what we need! For example, I do not order my adhesive removal spray every month because 1 bottle will last me a couple of months. However, I know some ostomates that have to order this every month. It is about us being mindful about what products we need and to see if we can reduce excess use of products if we can. As mentioned above I do not believe the system is being abused as much as the CCG’s have been making out.

When it comes to stoma products it is not a case of one size fits all. We all have individual needs and having access to the right products for us is important!

So how are ostomates being affected?

Recently a number of advocates have noted that this year more and more ostomates, are coming to us for advice when they have received product audit letters or prescriptions are being halted/ changed or refused!

A few weeks ago I wrote a Facebook post about these cuts and sent it to the ostomy groups. I was shocked with the number of people that have experienced these problems and the stories that were shared.

I felt I needed to collate my findings highlighting the counties where some ostomates had been affected on a map. This was an informal collection of data from about 30 individuals that have been affected. I must point out that I am aware if you see that your county is coloured in but you yourself have not experienced any problems that this does not mean everybody in the area is affected. This also depends on the individual GP practices and how they implement these guidelines.

Map of the Areas Ostomates Have Been Affected

As you can see from the map the South East has been hit hard as well as the Midlands! Again as mentioned this was a snapshot and informal study but I believe there should be more research on a larger ‘formal’ scale undertaken in order to have accurate and strong figures.

Some of my discoveries found that ‘deodorizers’ are being cut off prescriptions completely. Now with this item, I do understand this cut and I personally buy my own deodorizer ‘VIPoo’ this is a way where we can help the NHS save money. Other ideas are to use tic tacs in your pouch to help with the odour. This is maybe an area we could cut back on and buy our own.

However, items like adhesive spray, powders, rings and the specific manufacturer and type of pouch we have chosen are IMPERATIVE to us and very much needed.  Also in some areas, the amount of pouches ordered and used have been questioned.

 What do I do if this happens to me?

If you receive a product audit letter that has worried you or concerned you then please go back to your GP and discuss those concerns. The key is to communicate and explain WHY you need certain items.

It may be helpful as explained earlier to find your local CCG Stoma guidelines and formulary list if they have one, to read over before you see your doctor. I am aware that some areas are requesting for patient review appointment and again this is the perfect opportunity to present why you need certain items in a respectful but knowledgeable manner.

If after you have done this, you find your GP has still decided to cut or change a product then it is advisable to call your Stoma Community Nurse. The majority of stoma care nurses are on our side and many ostomates that have encountered problems have found their stoma nurses have backed them up. I appreciate this may not be the case for everybody. At the end of the day, the stoma care nurses are under a substantial amount of pressure to cut expenditure as well but ultimately if we have specific reasons for a certain product they will take that into account.

If an item is still going to be cut and you feel strongly that you need this item to stop leaks or have a better of quality of life then at this stage you could either go to Patient Advice and Liaison Service (PALS) in your hospital or to the practice manager of your surgery. Also, the Independent NHS Advocacy Service can help support you through this and point you in the right direction.

If you find that after this action you still have not got anywhere now where do you turn to???

There is a brilliant webpage (https://www.coloplast.co.uk/patientchoice) that you can read and help inform you of certain rights. Also, this NHS complaints document is very good to read as well (https://www.nhs.uk/nhsengland/complaints-and-feedback/pages/nhs-complaints.aspx

The next step would be to contact your local Healthwatch for assistance as they are the bridge between the NHS and the patients. There is a National Healthwatch body but it is better to approach your local group.

The last option would be to go to your local MP explaining your problem.

To make this easier to follow I have produced a flowchart! I hope this helps...

 There is a plan in the future for the pouches to be standardized for all. Now please do not panic from the mini research I have conducted I do not think as of yet this is being implemented but there may be a time where cheaper options for pouches will be favoured.

Therefore it is so important we know our rights and where to go if this happens. For example, I have an ileostomy prolapse and the only pouch that works for me is the Coloplast Sensura Mio deep convex, if this was to be changed I would have lots of leaks which would affect my quality of life!

Specific patient groups and the Associations – Colostomy UKIleostomy Association, Urostomy Association and Fight Bladder Cancer are all working hard to challenge these changes and have done a great job so far.

Conclusion

As mentioned these cuts are happening but we need to be informed and empowered to know our rights. Be mindful and if you feel in your heart you could cut back on a product or do not need it every month then please try this, we need to also do our part. However, some of these cutbacks for ostomates are ridiculous and can really affect the individual quality of life. We need to join together to challenge these changes because I feel this will only get worse in time.

Here are a few accounts of ostomates that have been affected by the cuts:

"I am increasingly hearing of ostomates becoming distressed, due to product audit letters arriving without warning. Not every ostomate is internet savvy and many are not aware of the guidelines issued to GPs last year. In Kent, we are feeling this squeeze and I want to fight for local ostomates!

We are having our every move questioned and products changed to generic brands, to please the budgets of the area. However, one size does not fit all and I feel the abuse of product ordering has been vastly exaggerated. It would appear that SCNs have created their findings, based on the average patient. This area needs looking at on an individual basis, not an average. Each patient, each stoma, each condition suffered from are unique!! To treat us, all the same, is quite frankly an insult!

This should not have been a decision made without a consultation with local advocates, Stoma Care Nurse, patients and GPs together. It is very clear that many GPs are completely unaware of the needs of ostomates, so it makes sense that they would need guidelines for prescribing – but where did patients being prescribed to have their say? This is far more than a few products costing money. These are items that dictate whether a patient leaves the house, whether they have sore and sometimes horrifically open areas of skin. This leads to the bag not sticking, creating leaks and therefore an ongoing cycle of painful skin conditions. This vastly affects an ostomates mental health and ability to cope.  We are incontinent FOR LIFE. This is not a fun, shopping adventure for us, it is surviving comfortably. If one item is the difference between no leaks, a bag that sticks and therefore good peristomal skin, then that item is worth its weight in gold to an ostomate.

I am not in any way undermining the knowledge the professionals have but it feels like they are undermining our experience. Unless you live with a stoma, you can NEVER understand how vital it is that we find what works for us. All too often I see patients seeking advice from online support groups, where they receive no judgment or patronising comments. The vast majority of patients work out what works through experienced ostomate advice or through trial and error. However many sadly find that they request these items, will want to question and change the items, then causing refused prescriptions from the GP. The wait between appointments and decisions made with an SCN, could be the difference between constant leaks or not.

This issue ISN’T about patients ordering what looks good or what is marketed well. None of us takes joy in requiring these items! It’s about finding the BEST solutions for ourselves and being able to make these decisions without fear of them being revoked. For example, I have great skin around my stoma. I use a barrier spray and powder which are being stopped or changed based on these guidelines. Now the argument is that my skin is good, so I don’t require these items but my skin is good BECAUSE of these items! "                                                                                                                                 [Shell Lawes aka Stoma in a Teacup

I live in Lancashire and I have a urostomy, I am still trying to get my prescription authorised from September regarding my adhesive remover sprays, Brava base plate extenders, barrier sprays and even my night bags have been cancelled so I have had to buy from eBay and Amazon.                                     [Anonymous]

I live in North Ayrshire and I have had my dry wipes removed. The letter told me to use good quality kitchen roll or something with similar quality. If you have used Kitchen roll with a stoma it is a nightmare and sticks to the stoma.                                                                                                                                          [Colin]

I live in Bristol and I was told by my stoma nurse that I couldn’t have adhesive spray and adhesive wipes. They also made a remark that I was on the cheapest spray!                                                                                                                                                                                                                             [Anonymous]

I live in Nottingham (East Midlands) and I requested two boxes of skin barrier wipes and was denied this. Also, I was going on holiday for 2 weeks abroad I was challenged for ordering double the amount of ouches and wipes. However, my stoma nurse was angry that they wouldn’t let me have the skin barrier wipes and spoke to Nottinghamshire Appliance Management Service (NAMS) on the phone.                                                                                                       [Paulette]

References

Written by : Rachel Jury

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My experience
Thanks for sharing this Rach it ISVs a big issue. Here in South Glos I had to change the brand of adhesive remover spray and wipe I used (Brava) to a cheaper one. I do feel I use more of the generic spray and tonic her wipes are really small, but it is not to the extent of others. It was frustrating too that when they wrote to me they didn’t include the product numbers they wanted me to use so ha a bit of a time with my supplier to check I was no way ordering correctly.

I do think further research is needed, let me know off i can help.IDAp

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