PIP for Gastroparesis - Can You Claim?

Gastroparesis - delayed stomach emptying - causes persistent nausea, vomiting, abdominal pain, bloating and malnutrition. Whether it's caused by diabetes, surgery or is idiopathic, the functional impact on daily life can be severe. Many people with gastroparesis are malnourished, in constant discomfort and unable to eat normally.

Which PIP Activities Does Gastroparesis Affect?

Taking Nutrition (Activity 2) - This is often the highest-scoring activity. Gastroparesis directly affects your ability to eat and drink. If you need to eat tiny portions throughout the day instead of normal meals, if you vomit after eating, if you need a specific texture diet (liquids only, pureed food) or if you are tube fed, all of this is relevant. Supplement drinks such as Ensure or Fortisip are not a "therapeutic source" under the regulations and do not score on their own, but they are strong evidence that you cannot take nutrition normally. If someone needs to prepare your food in a specific way or prompt you to eat when you're nauseous, this also counts.

Preparing Food (Activity 1) - Severe nausea makes standing at a cooker unbearable. The smell of cooking food triggers vomiting. Fatigue from malnutrition prevents standing long enough to cook. If you cannot prepare food for yourself because the process itself makes you sick, describe this specifically.

Managing Therapy (Activity 3) - Gastroparesis involves a lot of daily management, but be precise about what scores here. Needing someone to prompt or help you with medication (domperidone, metoclopramide, erythromycin) or with blood sugar monitoring if you are diabetic is descriptor (b) at 1 point, however many medicines you take. Hospital appointments (gastroenterology) do not count, and tube feeds are scored under Activity 2 as a therapeutic source rather than here. The therapy hours in descriptors (c) to (f) only cover prescribed non-drug treatment done at home, such as a dietitian's feeding plan, and only the time another person spends supervising, prompting or assisting you with it.

Moving Around (Activity 12) - Malnutrition-related weakness and fatigue limit walking distance. Severe bloating and abdominal pain make walking uncomfortable. Nausea worsened by movement.

Engaging with People (Activity 9) - Social isolation from inability to eat normally in social settings. Depression from chronic illness. Embarrassment about vomiting in public.

Tube Feeding and PIP

If you have a nasogastric (NG) tube, nasojejunal (NJ) tube or surgical feeding tube (jejunostomy/gastrostomy), this is strong PIP evidence. Tube feeding through a feed pump or similar delivery system is a "therapeutic source" under Activity 2: descriptor (c) at 2 points if you set up and manage the feeds yourself, or descriptor (e) at 6 points if another person has to set up, connect or manage them for you. It does not count as Activity 3 therapy hours, though needing help with medication given through the tube is Activity 3 descriptor (b) at 1 point. Tube feeding typically takes 30-60 minutes multiple times daily, plus cleaning, flushing and medication administration through the tube, so say who does each step.

What Evidence Helps?

• Gastroenterologist letters with diagnosis and gastric emptying study results
• Dietitian reports
• Weight records showing weight loss or malnutrition
• Tube feeding records if applicable
• Hospital admission records for dehydration or malnutrition
• Food diary showing what and how little you can eat

Causes of Gastroparesis

• Diabetic gastroparesis: Most common identifiable cause. Often type 1 diabetes of 10+ years.
• Idiopathic gastroparesis: No identified cause. Often follows viral infection.
• Post-surgical: After bariatric surgery, vagotomy, oesophagectomy.
• Connective tissue disease: Scleroderma, EDS, mixed connective tissue disease.
• Neurological: Parkinson's, MS, autonomic neuropathy.
• Medication-induced: GLP-1 agonists (Ozempic, Wegovy), opioids, anticholinergics.
• Post-viral: Often resolves but can become chronic.

Gastric Emptying Study (Scintigraphy)

Gold-standard diagnostic test for gastroparesis:

• 4-hour study with radio-labelled meal
• Normal: less than 10% retention at 4 hours
• Mild gastroparesis: 11-20% retention
• Moderate: 21-35% retention
• Severe: over 35% retention at 4 hours

Include test results with PIP application. Higher retention indicates more severe disease.

Treatment Pathway

• Dietary modification: Small frequent meals, low fat, low fibre, liquid nutrition
• Prokinetics: Domperidone (cardiac monitoring needed), metoclopramide (limited duration), erythromycin
• Antiemetics: Ondansetron, prochlorperazine, cyclizine
• Botulinum toxin pyloric injection: Variable effectiveness
• Gastric electrical stimulation (Enterra): For refractory cases. Specialist centres only.
• Pyloroplasty / G-POEM: Surgical pyloric muscle disruption
• Jejunostomy tube: For nutrition bypass when oral intake inadequate
• Total parenteral nutrition (TPN): IV nutrition for most severe cases

Activity 2 Detail for Gastroparesis

• Descriptor b (2 points): Needs an aid or appliance (adapted utensils for weakness or tremor), supervision to eat safely or assistance to cut up food
• Descriptor c (2 points): Needs a therapeutic source, meaning tube feeding or parenteral nutrition through a feed pump, which you manage yourself. Liquid supplements (Ensure, Fortisip), tiny portions and special textures are not a therapeutic source and do not score on their own, but they are evidence that you cannot take nutrition normally
• Descriptor d (4 points): Needs prompting to take nutrition - someone has to remind or encourage you to eat or drink, meal by meal, because nausea stops you
• Descriptor e (6 points): Needs assistance to manage a therapeutic source - another person sets up, connects or manages your tube feeds or TPN
• Descriptor f (10 points): Cannot convey food and drink to your mouth at all and needs another person to do so

Complications Common with Gastroparesis

• Malnutrition: Weight loss, vitamin deficiencies, low albumin
• Dehydration: Frequent hospital admissions for IV fluids
• Bezoars: Solid masses of undigested food, sometimes requiring endoscopic removal
• Severe blood sugar fluctuation in diabetics: Unpredictable absorption
• Gastro-oesophageal reflux: Common, often severe
• Aspiration pneumonia: Risk from vomiting
• Dental erosion: From recurrent vomiting
• Mental health impact: Depression, anxiety, eating disorders develop
• Reduced quality of life scores: Often comparable to severe chronic illness

Frequently Asked Questions

I can eat small amounts. Does that mean I don't qualify?

Eating small amounts with significant difficulty, nausea and vomiting IS a qualifying difficulty. PIP Activity 2 covers the ability to take nutrition in a normal way. If you can only eat tiny portions, need specially prepared food, vomit after most meals or rely on nutritional supplements, you are not taking nutrition normally.

My gastroparesis is caused by diabetes. Do I claim for both?

Yes. List diabetes AND gastroparesis separately. Diabetes affects Activity 3 (blood sugar monitoring, insulin, diet) and gastroparesis affects Activity 2 (eating). Together they score significantly higher than either alone.

I am on Ozempic/Wegovy - is my gastroparesis from that?

GLP-1 agonists can cause significant gastroparesis. Some cases persist after stopping the medication. If you have functional impact, you can claim PIP regardless of cause. Discuss medication options with your prescriber.

I have a Domperidone prescription but it does not work well - what now?

Many patients have inadequate response to first-line prokinetics. Options include erythromycin (often time-limited due to tachyphylaxis), specialist referral for botulinum toxin, G-POEM or Enterra gastric stimulator. Document treatment attempts as evidence of severity.

I am on TPN at home - what about PIP?

Home TPN indicates severe gastroparesis. TPN run through a pump is a therapeutic source under Activity 2: descriptor (c) at 2 points if you set up and manage the infusions yourself, or descriptor (e) at 6 points if another person has to manage the line and the feed for you. Descriptor (f) at 10 points is only for someone who cannot convey food and drink to their mouth at all and needs another person to do so. Needing help to watch for line infections or to take medication is Activity 3 descriptor (b). Combined with the other activities gastroparesis affects, this often supports a substantial award.

Will my PIP affect my Enterra device funding?

No direct connection. Enterra (gastric electrical stimulator) is NHS-funded for eligible patients regardless of PIP. PIP is separate income support.

I cannot tolerate any oral medication - what do I do?

Many medications are available in IV, IM, suppository, transdermal or sublingual forms. Discuss with your pharmacist and consultant. Inability to tolerate oral medication is itself evidence of gastroparesis severity.