Living in Pain is Deadly

Living in Pain is Deadly

The tide has turned on chronic pain management.  Anyone who follows the media in any capacity will have seen this shift particularly in regards to opioid medication with regular mentions of addiction, and the harm it can do.  What generally is getting left behind in this discussion is patients with chronic pain and the harm untreated pain can also do.

The very few appointments I’ve had with Pain Consultants in the last few years have also had a tone change. It’s gone from a dismissive ‘there’s nothing we can do for you so you need to live with it and manage the pain as best you can with the medications you are on’, to a very similar one that includes a long lecture about the need to reduce the medications I’m on. Ah, because of the side effects? No, that’s not the reason. Because I’m abusing them? Not at all – I’ve taken the same medication at the same dose as prescribed for many years.

No alternative is offered. I’m not told about any of the latest research or studies on pain reduction. I’m simply told it would be best if I reduced my pain relief. I then counter with a question about quality of life – how am I meant to function with an incredibly painful condition with no pain relief? It’s a question that never gets answered.

I have been under the same Pain Clinic since I developed chronic pain at age 15 and I’m now in my 30s.  So I have now been in constant, crippling pain for over half my life – and in that time nothing has changed. There have been no new treatments offered after exhausting the very little allowed Physiotherapy and Hydrotherapy on offer.  I personally spent many years and a lot of money trying every therapy I could find – from exercise-based to stretching, sticking needles in me, to weird off-beat ones, ones that target the mind and many in-between.  The NHS, however, has offered the same few inadequate options. 

While I’m sure research and studies go on in the field of pain – I don’t keep up with them at all.  This may seem strange to those without pain – but it would simply be a heartbreaking way to spend my time. Even if there is a miraculous breakthrough, having that get through all the trials, work for all patients with pain, be funded and offered by somewhere I can access are all huge steps to climb. 

The judgement always feels like it’s on the patients to be doing something differently.  Self-management. How I’ve come to loathe that term.  If cards were dealt to chronic pain patients – self-management should just be one in their hand, along with Specialist Consultant, Psychological Support, Care Needs, Equipment, Treatment Options, Medication and I’m sure you can think of many others. What it feels like instead is the NHS has either run out of cards to give or have taken the rest away, so the patient gets left with one single option of self-management and are told to like it, or lump it.

I’ve had many of those other cards ripped away from me, but I’m still clinging on to my medication card. I feel judged for doing so and more importantly, I feel scared. Every time a new report comes out about opioid medication and addiction, I wonder what the impact will be on chronic pain sufferers. Of course addiction happens, and I’m not suggesting it’s an issue that should be ignored – but instead it’s those of us with incurable painful conditions simply being left out of the equation instead.

There are such amazing advances taking place in medicine, but the knowledge we have of both pain and pain relief still feel so basic.  How much money and research actually takes place in creating non-harmful painkillers?

The UK should not follow the same approach as the US that has villainised chronic pain patients. It seems many Pain Clinics in the US now have a blanket ban on prescribing pain relief, and will not take patients that have existing prescriptions. For the very few that do allow medications, they will often make patients sign a contract with them that has numerous restrictions such as spot-check urine tests and the fact the patient is simply not allowed to take anything other than their prescription. While it may seem reasonable on the surface – this can include patients having to refuse pain relief after accidents, operations or similar.  People with complex conditions can metabolise medications differently, and I’ve seen cases where people who took what was prescribed having their prescription revoked because their urine test either showed not enough or too much in their system even though they were taking what they were supposed to.  Other patients have had to stop taking cannabis or CBD oils used legally that they found helpful because their contract had a blanket ban on them.

Not only do patients find the contracts stressful and coercive (i.e. they have to sign them to receive any pain relief) a 2010 review also found that evidence was weak that these contracts actually reduced misuse of medications.   

I personally believe it should be basic care to receive adequate pain relief,  and when it’s treated this way the relationship between patient and doctor simply becomes both negative and fearful. An article in the British Medical Journal states, “One systematic review suggested that addiction occurs in 8%–12% of individuals taking prescription opioids, but most data in the review derive from the USA and we have no definitive figures for European populations.” So not only are a lot of fears of addiction coming from data in the US where the addiction rates are simply higher, then even taking the figure from the US of 12% it still means a huge majority are taking the medication correctly and as prescribed.  

Generally both chronic pain and Pain Clinics in the UK are an underfunded and underresourced area. Just taking my local hospital alone five years ago the clinic had eight full-time consultants, two pain nurses, a pain psychologist and numerous support groups and pain management groups that were run weekly.  From that list, all that remains is one part-time consultant.  The rest have simply vanished.  Yet rates of chronic pain patients and their needs have not gone away.

If the NHS wish to reduce the use of painkillers they need to offer well-funded Pain Clinics that can offer an array of services and alternatives in return. They can’t remove both the clinics and pain relief and expect patients to just ‘get on with it’.  The result will simply cause far more of a burden on other medical and care services as patients deteriorate, and there will almost definitely be a massive increase in chronic pain related suicides.

The Future of the NHS

The Future of the NHS

The NHS is currently under threat from something called the ‘Health and Social Care Bill 2011’.

The bill will make many changes, including abolishing Primary Care Trusts (PCTs) and grouping together GP groups to run their area. While we hope GPs are making decisions based on the patient, they are much more likely to be influenced by finances under the changes. I also hope my GP is spending her time reading the latest research, keeping up to date with training and new medications, not budgeting for the local area. It will allow private companies to take over NHS hospitals, or the services that appeal to them and will stop the NHS being the comprehensive service it should be.

20% of the NHS budget will be spent on things like dealing with the contracts with private companies, advertising, the legal bits that go along with contracts, and a lot of other stuff that isn’t providing quality healthcare or trained staff. Many people will be made redundant – with payments having to be made, and those running the PCTs are likely to then be employed to be consultants to the GP groups.

The postcode lottery that already exists will become even more pronounced, with standards and range of care dependant on where you live. Hospitals will be able to treat more private patients, which seems okay in principle into you need the bed someone who can afford to pay for one is in.

It is one thing if you have an injury and go to A&E to be fixed, or you need a single operation like a knee replacement. The difficulty comes when people are chronically ill, such as myself. With these conditions come all sorts of problems, in different parts of the body, and there is no one specialist that can help me. At the moment my GP can refer me to a variety on consultants, and I currently see six consultants on a regular basis, in different parts of the country.

Under the new plans – the person I want to see may now be available only if I can afford to pay for it, which goes against the very philosophy of the NHS – free care, from cradle to grave.

Debates will be happening soon on Clause 4 of the NHS Bill, also known as the “hands-off clause.” It will completely change the way the minister’s duties towards the NHS, and mean they will only be able to stop something happening, or bring a change in, if they can demonstrate there was no other course of action. This isn’t very easy to do. The NHS is one of the most important issues for voters, and they are expecting ministers to try and take care of it – not sign a bill waiving away their responsibility.  More information on this clause can be found here.

The government did not state in their manifesto they would be making these changes, and public support is largely against it, yet they seem to be pressing forward with them.
I’ve been trying to follow the 38 Degrees campaign, who have taken petitions to hundreds of MPs, including Nick Clegg, send thousands of emails, and are now asking people to ‘email a Baroness Lord’ at random to ask them to attend the debates. My pick is Baroness O’Neill, so I will be emailing her to tell her why I don’t support the bill.

You can do the same here.

Credit to Grafixar

Credit to Grafixar