Campaigning

Paralysed bowel care campaign

It’s not only mobility. SCI means bowels can be paralysed too.

Bowel care is often neglected in medical settings due to the lack of training opportunities. Which can be life threatening.

SIA provide essential care plans for anyone who is concerned about their bowel care in medical settings, and offer specialist training to healthcare professionals. But we want to do more.

We want to help healthcare professionals challenge the bowel care policy at their NHS Trust. If it isn’t good enough, let’s improve it. Together.

Paralysed bowel banner

The campaign 

In 2024, we rebranded our Serious Sh1t campaign to the Paralysed Bowel Care Campaign in collaboration with Hudgell Solicitors. This change marked the beginning of a significant push for awareness and policy change regarding paralysed bowel care.

Nurses, carers, charities and politicians are all backing a major campaign by SIA to stop patients with spinal cord injury suffering harmful neglect because they are being denied essential bowel care in medical settings.

Parliamentary Engagement

We consolidated the key issues and presented them at a Paralysed Bowel Care Roundtable event in Parliament. The event saw excellent engagement from MPs, highlighting the importance of our cause.

Progress and Achievements

Following the roundtable, we submitted several questions to Parliament. Gill Furniss MP was selected for an oral question, leading to a pivotal meeting with the minister. The minister acknowledged the critical issues we raised and agreed to advance our key requests:

  1. Paralysed Bowel Care Awareness Day Establishing a dedicated awareness day. The first national awareness day will take place on Monday 10 February 2025.
  2. Carer Access in NHS Settings: Allowing carers to perform bowel care where necessary.
  3. Dedicated Nurse in Each NHS Trust: Ensuring each NHS trust has a nurse trained in paralysed bowel care.
  4. Emergency Care Pathway: Recognising and implementing our proposed emergency care pathway.

Future Plans

An election was called, placing our plans in the hands of the new administration. Despite this, we continued to work with civil servants and successfully secured the first Paralysed Bowel Care Awareness Day on 10 February 2025. This milestone will be marked with various charities and interested parties providing information in the House of Commons for MPs.

We have also been promised a meeting with the health minister, to discuss our remaining requests. We will keep you updated on our progress through social media and our monthly newsletter, The Voice.

Stay tuned for more updates and join us in advocating for better care and awareness for paralysed bowel conditions


Bowel care

It can be one of your most distressing and embarrassing concerns if you have a spinal cord injury: how can I manage the loss of control over my bowel?

red and blue graphic showing internal bowel through body

A spinal cord injury doesn’t just affect the ability to walk, but all bodily functions below the point of injury including bladder and bowel function. People with spinal cord injuries need interventions to help them empty their bowels at a convenient time to prevent constipation and incontinence.

Often, they will rely on another person to undertake these interventions – and that can be a huge problem when they have to go into healthcare settings, because healthcare professionals require training to understand the importance of and how to deliver these intimate care requirements.

BOWEL MANAGEMENT


The reality of the story … 

Paralysed Bowel Campaign - man sitting up in hospital bed looking sadJust imagine … you are unwell, trapped in bed. Despite asking for help you have been told you cannot go to the toilet. You have been put in a nappy and told you must open your bowels in that and wait for someone to come and clean you up …. When they are free!

Your skin becomes sore and almost burnt from your own excrement. The bacteria from your poo has entered your bladder and you are becoming more unwell due to a bladder infection, with a risk of septicaemia. After a while you start to become constipated and your abdomen becomes so bloated that it is now difficult for you to breathe and you are developing a chest infection.

Your family and associates are willing to come in and help you go the toilet but they are not allowed.

Your bowel is becoming so full that there is a serious risk of bowel perforation but before this occurs you are terrified because you know if this doesn’t kill you then the risk of your blood pressure reaching such high levels could kill you anyway but no one is listening.

You lay in the bed with all sense of dignity and control lost … helpless.

As many people with spinal cord injury know only too well, this isn’t a scenario they need to imagine because it’s all too real for them. 


What Matters? to people with SCI …

Our annual survey gives a huge indication about the importance of bowel care and management. These were the key findings regarding bowel management in 2024:

51%

51% said that bowel management was their main concern of life with a spinal cord injury.

54%

In our ‘What Matters?’ survey in 2024, 54% said they had received substandard bowel care after being admitted as an inpatient.

Almost half of our survey respondents said they had been admitted to hospital in the last two years as an inpatient. This was found to have lasting repercussions because 40% of respondents said it took three or more months for their bowel function to return to normal after being discharged. Even more worrying is the response from more than a third (34%) of people who said bowel function was still a problem after being in hospital.

The lack of knowledge about spinal cord injury-specific bowel care in general medical settings can put the community at real risk of further complications.


This situation has to change …

This widespread failure of care stems from a combination of a lack of policy and a lack of training for far too many healthcare professionals.

An article in the Nursing Times on continence care in March 2023 cited a 2022 report from the National Institute for Health and Care Research which stated:

We conducted a Freedom of Information request to all NHS England Trusts, the Welsh Health Boards and the Health and Social Care Trusts in Northern Ireland. Of the 123 NHS trusts across England we wrote too, only 54 reported having a formal written policy for dealing with the specialist bowel care required for those with a spinal cord injury. What’s more 26 trusts admitted they had no bowel assessment and management policy in place at all, with 40 trusts saying they had no ward-based staff skilled in supporting these patients.

The FOI revealed that 65 trusts said they didn’t have a policy that allows for the personal care assistants/carers to assist with the bowel care element of the patient’s care. However, 21 trusts said they did have a policy that allows this to happen. 37 Trusts in total either didn’t respond or declined to comment on this FOI request.

 21

Only 21 NHS England Trusts allow the personal care assistants/carers of SCI people to assist with the bowel care element of the patient’s care

 

We’re campaigning to raise this issue at the highest level, and call for action to ensure NHS healthcare providers have a fully implemented bowel care policy in place. The Royal College of Nursing are also keen to work with us on what they believe is a vital campaign.

Fiona le Ber, chair of the RCN’s bowel and bladder forum said: 

“No healthcare professional should be expected to carry out specialist procedures without the correct training or support.  We acknowledge standards of care need to change and the Royal College of Nursing support the training of more healthcare professionals in specialist bowel care technique so that no patient suffers both the physical and mental consequences of poor bowel care.”

We understand that change won’t happen overnight, but we will continue to actively campaign on this issue until we see an end to this needless suffering.  It’s time we were all more open about bowel care but unfortunately, it’s still a subject that patients feel embarrassed to discuss.


Mo’s Story 

Mohammed Belal a consultant urological surgeon at University Hospital Birmingham sustained a SCI after being struck by a tree in 2021 said: “Personally, the hardest part of my spinal cord injury journey was the bowel care. Correct bowel care is crucial for people with spinal cord injuries to prevent severe physical complications such as constipation and bowel obstruction.”

mohammed belal

Poor bowel care can have significant mental and emotional effects, with a decreased quality of life, social isolation, and depression. It is so important to get it right. 


Emergency Care Plan

As part of this campaign we also want to encourage all people with SCI to have an emergency care plan (ECP) in place, so that your essential care needs are clearly documented if you ever have to be admitted into hospital.  Click the button below for more details and an appointment booking form:

emergency care plan

Support our campaign

If you want to support this vital campaign, for example by writing to your MP about this issue or by contacting your local healthcare provider to see what bowel care policy they have in place, please contact [email protected] 

Media and PR

If you see anything in the news regarding this campaign please get in touch with our media team. Email: [email protected]