My Blog

NHS Cuts Finally Affecting Ostomates! Know Your Rights!

NHS Cuts Finally Affecting Ostomates! Know Your Rights!

Quote

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

The Ostomistic Life Online Magazine Feature

The Ostomistic Life Online Magazine Feature

The Ostomistic Life is a free online magazine to help ostomates under 40 navigate life with an ostomy. Founded and created by Talya Goding who runs a blog Feeling Ostomistic. Talya strongly felt the need for more relatable content for young ostomates and so the quarterly online magazine was born!

Ostomistic Life Magazine

I was very honoured to be asked to write an article for issue 2 titled “Life as a Double Bagger Part 1” which you can check out HERE on Page 36-41.

Thanks for reading and all your support, means so much x

Let's Celebrate International Day of Persons With Disabilities

Let's Celebrate International Day of Persons With Disabilities

Today, the 3rd of December is International Day of Persons With Disabilities!!

Disability equals diversity, not disadvantage!!

In the UK alone there are 13.3 million disabled people (SCOPE Figures)

  • 7 per cent of children are disabled 
  • 18 percent of working-age adults are disabled
  • 44 percent of pension age adults are disabled

International Day of Person's with Disability was proclaimed by the United Nations (UN) in 1992 to promote awareness and mobilise support. Today aims to promote the rights and well-being of persons with disabilities in all spheres of society. To increase awareness of the situation of persons with disabilities in every aspect of political, social, economic and cultural life.

International Day of Persons with DIsabilities

So in line with this...

My name is Rachel and I am disabled...

This for me is hard to admit because I like to think I am healthy and put my head in the sand quite a bit. However, the fact is I am disabled but today I do not let it hold me back! Instead, I see my disability as an 'ability' my 2 stoma bags have given me my life back, amazing friends for life, a kind loving man and a community I feel I belong in! My disability has given me far more than I could have ever imagined and although some days can be tough I still have found a sense of acceptance and peace with myself that I would never have found without my illness!

 Get Informed and Get Involved!!!

So let's celebrate this day TOGETHER and if you feel happy to share I would love to hear your STORY!!

The Backbone of the NHS

The Backbone of the NHS

Many of you reading this post have spent a fair amount of time in hospital. It’s  pretty hard not too when you have an ostomy, and everything that can come with that!

Since my urostomy surgery in 2015 when I officially became a ‘double bagger’ I have spent a lot of time in hospital due to complications with my ileostomy prolapse, numerous refashion surgeries, kidney infections and recurrent unknown sepsis. Last year I clocked up a total of 7 months as an inpatient in Bournemouth Hospital mainly on ward 15 and 16 the colorectal and urology surgical wards, which were fantastic and like my second home. This year I have only been admitted 6 times which is a miracle in itself compared to last year. 

Being a regular inpatient we have a very unique position where we see and observe what goes on! Witness changes on the ward that work well and some that don’t. During our many admissions we build a rapport with staff from cleaners to doctors and nurses to porters.

When most people praise a recent hospital admission they will regularly quote how amazing the Doctors and Nurses have been but what about the other staff??

I cannot deny the Doctors and Nurses in Bournemouth hospital especially on ward 15 and 16 have been amazing and have kept me alive on numerous occasions. However I would say from my own experience where I received my emotional support that helped me through the long bouts of admissions were the other members of staff! They reached me on a different level. The kindness they showed me spending a bit of time chatting and the relationships I built mainly lie with these sets of people: (I have had permission to post all these pictures last year)

  • The cleaners on the ward

The Backbone of the NHS

Every morning this lady would chat to me ask me how I was, sometimes help me tidy up my area. When I was in isolation and was unable to leave the room, this lady asked me what I needed and went and acquired certain items for me. The cleaners become a regular in your hospital ward life and the brief chat and acknowledgment everyday means the world and helps you realise that you are still a ‘person’ and not alone.  

  • Health care assistants (HCAs)

I have noticed over the years I spend most of my time with HCAs and they have taken over a lot of jobs nurses used to do, because of the paperwork and time restraints. Seeing them regularly during observations or helping you wash builds up a level of trust. They give you the time and sometimes that kindness allows you to be open enough to get vulnerable and emotional. Don’t get me wrong nurses also do the same but sometimes they do not have enough time and other patients may need their help more, so I tend to open up more to other staff.

  • Porters

The Backbone of the NHS 2

Porters are another department that really do keep the hospital ticking over!  After many investigations I have met a few of these guys and they are fantastic, have a laugh and again go above and beyond their normal duties. Last year they filmed a video titled ‘porters’ which is very moving and encapsulates what the porters in Bournemouth hospital are like. Their sheer honesty is heart felt and the video is definitely worth a watch....www.youtube.com/watch?v=wOT4EjbOdKo

  • Ward Host and Hostess

Backbone of the NHS

An important role where they hand out all the food, cups of teas and help patients order their food. These two have a very special place in my heart and have kept me going at times when I wanted to give up. The banter between these two is breathtaking and with their humour and caring nature touch every single patient who has been admitted on these wards. Their job is far more than just giving out the food and making cups of tea. The small kind gestures like remembering how I take my tea, offering me a biscuit and generally asking how I was. Again a regular face you see multiple times a day that is very comforting.  In particular I need to mention how much this man helped me during my 3 months admission stuck in an isolation room when I contracted C.Diff after surgery. He made a laugh out of the smell and had me in bits laughing. That man helped me more than he will ever realise not so much physically but mentally and allowed me to find the fight in myself to keep going.

If you haven’t read it already So Bad Ass blogger, writer, health activist and public speaker wrote a brilliant post called Dear Tea Lady  where Sam writes a letter thanking the Tea lady in Northern General Hospital for making her feel better every single day by just a smile and remembering how she likes her tea.

  • Clinical site

The Backbone of the NHS 4

Now lucky for me (not them) I got to see this team usually at night out of hours due to my bad veins and cannula always tissued. They were so supportive in the dead of night and many times fought my corner to get a PICC line insertion after failed attempts of putting a cannula in. This lady used to make my day when I saw her and we used to have banter about the dread the team felt when they saw my name on the job list because my veins are that bad. When I have my PICC line I miss seeing these guys. I would just like to point out how much it means to me when a member of staff remembers my name and says “Rachel your not back again” The fact they have remembered your name means so much and makes admissions easier.

  • Phlebotomists

Most mornings the phlebotomists will take blood. They are usually super quick and you may only see them for a few minutes but seeing these guys nearly everyday again you build up a relationship. One lady in particular who works on the weekends, always goes above and beyond for me, this lady showed me love, compassion and always gave me a hug if I was struggling. That connection or a hand touching your hand when you feel broken is better than any words

  • Bournemouth Hospital volunteers with the newspaper and food trolley

The Backbone of the NHS 3

Again a regular during the week going around the wards asking patients if they need anything from the trolley. For some patients the newspaper allows them to have a bit of normality into their routine and this can really help patients state of mind.

I believe that these members of staff are the backbone of the NHS. They not only keep the hospitals ticking over with not much recognition. It is these people I tended to turn to when I was upset and emotional, they went above and beyond their roles and were there for me. Sometimes the doctors and nurses do not have enough time to deal with your emotional needs due to being extremely busy but I noticed that these members of staff come through, not just for me but I witnessed with other patients on the ward as well.

I got to witness firsthand how humour in hospital is extremely important. It helps you get through the dark lonely times and can be quite healing. Having a laugh and some banter is a medicine in itself which can help a patient still feel like a human being and reach that fight within themselves that can sometimes leave after a long admission. The staff are also very good at judging when it is appropriate to have a joke and when it is not but this allows some normality to your otherwise very ‘clinical’  and regimental day.

So from the bottom of my heart to all the departments mentioned I thank you for always being there for the odd chat, beaming smile, recognition, asking how I am and allowing me to laugh! You ARE the BACKBONE of the NHS and I am eternally grateful for every single one of you x

Urostomy and Night Drainage Systems

Urostomy and Night Drainage Systems

Welcome to my 7th episode of the #UnderstandingUrostomies series all about urostomy and using a Night drainage system.

I have noticed that not everybody with a urostomy will use a night drainage system at night. In this post, I will explain a bit more about the different types of night drainage systems available and cover some hints and tips.

Read more

Urostomy Association Weekend Event and Why they Need Younger Urostomates to Get Involved!!!

Urostomy Association Weekend Event and Why they Need Younger Urostomates to Get Involved!!!

So for the last 5 weeks every Friday I have been doing the #UnderstandingUrostomies series and I have really enjoyed it. It is lovely having the positive feedback and seeing how many people the series is helping.

If you have seen from my Facebook Blog Page I have been in hospital this week due to a stubborn kidney infection and I haven’t had chance to put anything together in detail so I have decided for today’s post to write about my fantastic weekend at the Urostomy Association (UA) event 3 weeks ago on the 9th and 10th September in Staverton Park Hotel Northampton.

Read more

Urostomy and Diet?

Urostomy and Diet?

Welcome to the FIRST of my series #UnderstandingUrostomies which will be every Friday. This series should help educate ALL ostomates about Urostomies and some very unique issues we may have. Please get in touch with me if there is anything specific you would like me to cover. I am having a few problems with my blog atm and my old post about Urostomies and Urinary Diversions is not showing but when this is sorted please check it out if you do not know what a Urostomy is.

Read more

Swimming and a Spa with a Stoma

Swimming and a Spa with a Stoma

I used to love swimming as a child and I was a full on water baby. Taking part in swimming galas (my stroke was breaststroke) and life-saving clubs.

I always felt my true self and at one in the water. Any hard times in my life or stress with exams, I found myself in the pool...swimming. It was the instant stress buster. I felt happy and peaceful in the water and in my true element. Now I have been drawn back to the water and back to the swimming and spas. 

Read more

My Review of Pelican Platinum UROSTOMY Convex Pouch

My Review of Pelican Platinum UROSTOMY Convex Pouch

Week 3 of #everyhingstomas  and #bagroulette. This week I have been sampling the Pelican Platinum Urostomy Pouch for 7 days I used 2 pouches and the Pelican 1.5 litre night bag at night.

Initially, I was given Ileostomy pouches after requesting urostomy pouches but I called Pelican customer services and they were very apologetic and sent me out the Urostomy Convex pouches the next day.

Read more

My Review of the Salts Confidence Convex Urostomy Pouch

My Review of the Salts Confidence Convex Urostomy Pouch

Part of this month’s challenge for July on “The IBD and Ostomy Support Show” we are reviewing different manufacturer pouches. Last week I reviewed CliniMed Welland Aura Convex Urostomy pouch and night bag which I really liked apart from the 2nd day my skin feeling a bit itchy I would definitely recommend this product.

Read more

My Infertility

My Infertility

This has been a long time coming and it's not easy to write about. Like my rare illness and subsequent Ostomies have been a journey of acceptance so has my infertility! I want this to be an honest and open account of how it has affected me and at times how dark it got!

 However, now the universe has put Laurence and Molly, his beautiful 10-year-old daughter, into my path words cannot begin to describe how much she has enriched my life. I truly love this girl and it is pretty amazing that she entered my life when I was struggling with my infertility.

Read more