Any disabled person who has complex disabilities, that might include both physical and mental health disabilities, will know the sinking feeling when you are accessing hospital treatment, and a nurse asks for a ‘history’: what conditions you have, and what medication you are on. The problem is, over time, it can get harder to keep-up with all the information you need to relay to staff.  That might be matched by staff who don’t understand your needs or how to manage them. This can lead to poor and potentially unsafe care. Now, the NHS Ten Year Plan may improve this.

Disabled patients dread treatment due to poor, non trauma-informed care

Patients are aware of these problems, making the prospect of receiving treatment something they dread.

Nessa who has both physical and mental health disabilities says she finds the whole process of accessing hospital treatment can be terrifying.

Tilly who has autoimmune disorders, fibromyalgia, and a schizoaffective disorder said:

It’s so frustrating when they don’t understand my diagnosis.

She said that she often writes it down to stop the staff from “getting it wrong”.

Such poor care can be dangerous for disabled people with complex disabilities and health conditions. As someone who has spinal cord injuries (SCI), I know that if staff aren’t properly informed, then it could lead to more emergency procedures and long-time admissions, with all the dangers that poses, in terms of pressure sores and infections.

But there aren’t just physical dangers. It can often be the case that curious members of staff pry, wanting information such as how the injuries were caused, even if this isn’t directly relevant to the treatment.

Not only can this be tiresome, but emotionally the need to constantly repeat and relive a traumatic event can mean any remaining open wounds are being picked-at, preventing healing and closure.

NHS Ten Year Plan: co-created personal care plans

I’m pleased that the Spinal Injuries Association (SIA) have worked to try and solve this problem, developing Essential Care Passports (ECP). These plans give the patient tools to advocate for better healthcare. This can mean a daunting hospital stay, layered with risk, is transformed into something far more manageable: informed staff working alongside their patients.

The benefits these plans give patients and medical staff has been noticed by the government, which is now looking to roll-out co-created personal care plans for patients with complex needs.

The SIA said:

Over the past few years, we identified a critical gap in the system: far too often, people with spinal cord injuries were forced to retell their needs repeatedly in general healthcare settings that did not understand their condition leading to unsafe care, preventable complications, and poor outcomes.

In communication with the Government and key services we pioneered specialised care plans (ECP) to address the daily challenges faced by people with spinal cord injury navigating general health and care services. These care plans have already been adopted by individuals with spinal cord injury and several spinal cord injury centres (SCICs), and have shown they can transform care, reduce complications, and give people greater control over their health.

Such care plans have now been adopted by the government in the ‘Ten Year Plan‘ for the NHS. It has committed that by 2027, 95% of those with complex needs, like spinal cord injuries, will have a co-created personal care plan. This is a policy that stems from the work SIA has done in this area.

Empowering patients

Nik Hartley OBE, chief executive of the SIA, said of the NHS Ten Year Plan and its changes:

This is a game-changer for our community. We’ve spent years developing and championing personalised care plans (ECP) that transform the quality and safety of care for people with spinal cord injuries.

It’s incredibly rewarding to see the Government commit to making this the national standard, recognising what our members have always known: that care built around the individual’s specific and specialised needs doesn’t just improve lives, it saves them.

We’re proud to have helped shape this change, and we stand ready to work with the Government and the NHS to ensure it becomes a reality for tens of thousands of people across the country.

For a SIA member, having an ECP relieved her anxiety after a traumatic experience with the ambulance service, when they failed to listen to and engage with her needs relating to her SCI. She has no relatives, so is forced to self-advocate when in hospitals or taken in for treatment.

She said:

The emergency care plan makes me feel far more empowered to self-advocate, even if it takes me time to produce it!

With co-created personal care plans now part of government strategy, it can empower patients and give assurance that staff have the information they need, without the onus being on the patients to accurately recall (multiple times) their ‘history’ and medical needs. This will help patients like Tilly who is already writing her conditions and needs down on a list.

Better long-term health outcomes all round

These plans will also benefit staff. Chris, who got his ECP a year after his SCI, said he personally felt his plan was useful but also noticed how valuable the staff found it.

He said:

They thought it was absolutely amazing because it told them everything they needed to know, everything they needed to do and how they needed to do it.

The changes in the NHS Ten Year Plan don’t just benefit patients and staff. With co-produced care plans like the ECP it should save resources for the NHS by reducing emergency admissions, ultimately leading to better long-term health outcomes.

Find out more about getting support from the Spinal Injuries Association here.

Featured image via the Canary

By Ruth Hunt

This post was originally published on Canary.